Committee Transcript 2001-Feb-26 | Legislative Assembly of Ontario

Personal Health Information Privacy Act, 2000, Bill 159, Mrs Witmer /
Loi de 2000 sur la confidentialité des renseignements personnels
sur la santé, projet de loi 159, M^me Witmer

HIV and AIDS Legal Clinic (Ontario)
Mr Matthew Perry

Cancer Care Ontario
Dr Ken Shumak
Dr Eric Holowaty
Dr Verna Mai

Ontario Coalition of Psychiatrists
Dr K. Sonu Gaind

College of Medical Radiation Technologists of Ontario
Ms Sharon Saberton
Ms Debbie Tarshis

College of Nurses of Ontario
Ms Mary MacLeod
Mr Bill Campbell

Toronto Academic Health Science Council
Dr Jack Williams
Ms Gail Czukar

Institute for Work and Health
Ms Jane Bartram
Dr Sheilah Hogg-Johnson
Ms Jennifer Payne

Regional Municipality of York
Dr Helena Jaczek
Ms Manuela Di Re

Ontario Long Term Care Association
Ms Vida Vaitonis
Ms Lois Cormack

The Murray Group
Mr Ian Murray
Mr Stanley Burke
Mr David Baker

Algoma AIDS Network
Ms Kate Adams

College of Psychologists of Ontario
Dr Catherine Yarrow
Mr Gordon Rimmer

Ontario Dental Association
Dr Ralph Brooke
Mr Frank Bevilacqua

Dr Alexander Franklin

Alliance for Life Ontario
Mrs Jakki Jeffs
Mr Geoff Cauchi

Ms Claudette Grieb

Dr Richard Speers

Institute for Clinical Evaluative Sciences
Dr Andreas Laupacis
Dr Jack Williams

Baycrest Centre for Geriatric Care
Ms Gwen Yacht

Registered Practical Nurses Association of Ontario
Ms Joanne Young Evans

Federation of Health Regulatory Colleges of Ontario
Mr Jaro Wojcicky
Mr Richard Steinecke

Dr Bob Frankford

Ontario College of Pharmacists
Ms Tina Langlois

Dr Risa Deber

STANDING COMMITTEE ON GENERAL GOVERNMENT

Chair / Président
Mr Steve Gilchrist (Scarborough East / -Est PC)

Vice-Chair / Vice-Présidente
Mrs Julia Munro (York North / -Nord PC)

Mr Toby Barrett (Norfolk PC)
Mrs Marie Bountrogianni (Hamilton Mountain L)
Mr Ted Chudleigh (Halton PC)
Mr Garfield Dunlop (Simcoe North / -Nord PC)
Mr Steve Gilchrist (Scarborough East / -Est PC)
Mr Dave Levac (Brant L)
Mr Rosario Marchese (Trinity-Spadina ND)
Mrs Julia Munro (York North / -Nord PC)

Substitutions / Membres remplaçants
Mr Doug Galt (Northumberland PC)
Ms Frances Lankin (Beaches-East York ND)
Mrs Lyn McLeod (Thunder Bay-Atikokan L)
Mrs Tina R. Molinari (Thornhill PC)
Mr John O'Toole (Durham PC)
Mrs Sandra Pupatello (Windsor West / -Ouest L)
Mr Joseph Spina (Brampton Centre / -Centre PC)
Mr Bob Wood (London West / -Ouest PC)

Clerk / Greffière
Ms Anne Stokes

Staff / Personnel
Mr Andrew McNaught, research officer,
Research and Information Services

The committee met at 0904 in committee room 1.

PERSONAL HEALTH INFORMATION PRIVACY ACT, 2000 / LOI DE 2000 SUR LA CONFIDENTIALITÉ DES RENSEIGNEMENTS PERSONNELS SUR LA SANTÉ

Consideration of Bill 159, An Act respecting personal health information and related matters / Projet de loi 159, Loi concernant les renseignements personnels sur la santé et traitant de questions connexes.

The Chair (Mr Steve Gilchrist): Good morning. I call the committee to order for the fourth day of hearings on Bill 159, An Act respecting personal health information and related matters.

HIV AND AIDS LEGAL CLINIC (ONTARIO)

The Chair: We'll call forward our first group of presenters, the HIV and AIDS Legal Clinic (Ontario), if they'd come forward to the witness table, please. Just a reminder that we have 20 minutes for your presentation for you to divide as you see fit between either a presentation or question-and-answer period.

Mr Matthew Perry: Thank you. Good morning, Mr Chair and members of the committee. My name is Matthew Perry, and I'm a community legal worker with the HIV and AIDS Legal Clinic (Ontario). We are a poverty law clinic serving the legal needs of low-income Ontarians living with HIV or AIDS. We provide representation to individual clients and public legal education and community development for the betterment of the HIV-affected communities. We also participate in law reform activities, which is part of the reason I am here before you today.

We welcome the opportunity to speak to you today and express our concerns with respect to Bill 159. I have brought with me a written submission, which should be before you, and it will provide more detail to my oral comments here this morning. The submission was authored by Ruth Carey, my boss. She unfortunately couldn't be here today, so you get me.

People living with HIV/AIDS have a pressing and substantial interest in any legislation regulating the collection, disclosure and use of personal health information. When you live with HIV or AIDS, the accumulation of sensitive health information becomes pervasive. An average month can include multiple doctors' visits, trips to the pharmacy, access to complementary medicine care, interactions with government agencies, including community care access centres and income support programs, to name just a few. Health records with extraordinarily sensitive information are created and transferred at an alarming rate. Bill 159 purports to regulate this accumulation and flow of information. I'm here to tell you once again that we have a bill which fails to accomplish this in a way which respects, protects and upholds the privacy and confidentiality of Ontarians.

I must begin, therefore, by urging this committee to take very seriously the comments of the federal Privacy Commissioner made to you earlier this month. We were extremely pleased to see many of our concerns so clearly stated in Mr Radwanski's presentation, and we are in agreement with him when he told this committee, "I don't believe that a law that is so fundamentally flawed in virtually every provision can readily be fixed." Therefore, our first and fundamental recommendation is that Bill 159 be withdrawn and the Ministry of Health and Long-Term Care be instructed to redraft it. We would further recommend that the model draft legislation entitled Model State Public Health Privacy Act be the template for a new draft, and the cite for this is in your package of information. This model conforms with the Canadian Standards Association standards, which form part of the federal Personal Information Protection and Electronic Documents Act.

That being said, we have also prepared recommendations to try and ameliorate the most egregious harms which will occur if Bill 159 is passed. My comments this morning will address four broad areas: the scope of this legislation; permitted disclosures without consent; accessing one's own health information; and remedies for breaches of confidentiality. These submissions are by no means exhaustive. Instead, we have concentrated on those areas for which our expertise may be most helpful, and which are of most concern to people living with HIV/AIDS that we represent.

With respect to the scope of Bill 159, we submit that you were on a better track last fall. At that time, we participated in consultations with the Ministries of Health and Long-Term Care and Consumer and Commercial Relations with respect to a broader privacy act to which the regulation of use, disclosure and collection of personal health information would be a schedule. Such a piece of legislation would govern both the private and health care sectors and more readily meet the "substantially similar" requirement in the federal legislation. Unfortunately, that approach was abandoned and Bill 159 has been tabled as independent legislation. We therefore strongly urge that the regulation of personal health information only occur when Ontario is prepared to proceed with general privacy legislation for the entire private sector.

Our other concerns with respect to the scope of the legislation relate to the way Bill 159 contemplates the regulation of information. Repeatedly and consistently over the last four years we have urged you to craft legislation so that privacy measures attach to personal information itself, rather than selected people who have that information. This would ensure that it is the information that is protected and that the protection is in place no matter who has that information. A health information custodian should be anyone who comes into possession of personal health information about an individual as a result of providing services to that individual in circumstances such that a reasonable person would expect that information to be kept confidential.

The concepts of "use," "disclosure" and "person who is employed by or in the service of a health information custodian" in Bill 159 are far too broad. Currently, for example, a disclosure of personal health information by a care provider to a janitor in a hospital would not be a disclosure under the act-they're both employees of the custodian-or even to the volunteer in the gift shop. Because this is not a disclosure, the prohibitions and protections concerning disclosures do not apply. We have been called by a hospital, for example, where the union representing janitorial staff filed a grievance because the janitorial staff had not been warned that a patient was HIV-positive. Management wanted to settle the grievance by agreeing to disclose that information to janitorial staff in the future. We reminded them that the doctor had a obligation under the Medicine Act to keep that information confidential. The janitorial staff had no need to know this information for the purposes of the patient's care. We were able to advise the hospital that they could not agree to disclose the patient's status. That would not necessarily hold true if Bill 159 were passed. The definitions of "disclose," "use" and "person who is employed by or in the service of a health information custodian" need to be significantly narrowed.

In addition, sections 19 and 23, which leave the standards of confidentiality to regulations, need to be amended to list minimal standards required to protect confidentiality right in the act.

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With respect to the area of permitted disclosures without consent, I wish to emphasize how important this is to people living with HIV/AIDS and to underline the importance of informed consent. The CSA standards in the federal legislation state,"when personal health information is to be used for a purpose not previously identified, the new purpose shall be identified prior to use. Unless the new purpose is required by law, the consent of the individual is required before information can be used for that purpose."

Bill 159 fails to meet this standard. Section 25 leaves to regulation the circumstances in which a custodian should give me information about anticipated disclosures. For unanticipated disclosures, subsection 25(2), also leaving the circumstances to regulation, says the custodian need merely make a note of the use or disclosure, with the requirements prescribed in regulation. There is no requirement to inform me, let alone to seek my consent.

A significant number of the permitted disclosures without consent in Bill 159 are intended to cover current legislated mandatory reporting requirements or disclosures. They should be redrafted to accurately reflect that intention.

For example, 29(1)(d) allows for disclosure in order to contact a friend or relative if an individual is ill. There are already provisions for this situation under the Health Care Consent Act. The provisions in the HCCA are specific. Clause 29(1)(d) is far broader and therefore jeopardizes the privacy and confidentiality of the individual.

Clause 30(1)(a) is another example, providing for disclosure if it is made for the purpose of public health protection and promotion. Bill 159 allows for much broader disclosures than are currently possible under the Health Protection and Promotion Act. We already hear from health care providers who think they should disclose information because they think a third party might be at risk of transmission, which may or may not be true. They know the rules of their college prohibit this disclosure, but they call us to find out if they can make the disclosure anyway. Under Bill 159, they just might, with 30(1)(a) and the overly broad protections from liability. But the HPPA already provides for such situations, and the net effect of 30(1)(a) may be to keep people away from their providers for fear that their information may be disclosed without their consent.

Section 33 allows for disclosure where the custodian thinks there is a significant risk. I hear routinely that judges, crown attorneys and police officers believe that, for example, being spat upon is a significant risk of transmission for HIV. Many health care providers are equally ignorant of the significance of risks of HIV transmission. It's easy to see how this section might be used to justify the widespread disclosure of information without consent. Section 33 seems to be designed to address the issue of duty to warn. This is a very sensitive area of law, and one which the Supreme Court of Canada has specifically ruled on. Bill 159 seriously erodes the protections against disclosure available to individuals, with the potential for devastating effects. You'll hear examples later on today and throughout the next four days of the ways this can occur. We recommend that clause 33(a) be deleted, or at the very least redrafted to accord with the three-part test set out by the Supreme Court of Canada.

Turning to the issue of patient access, again I must emphasize what a significant impact this has on PHAs-people with HIV/AIDS. PHAs constantly have to access medical records in order to qualify or maintain eligibility for insurance benefits and income support like ODSP or Canada pension plan. Fees charged to get this information can be completely out of reach for individuals of limited means and compromised health. Bill 159 does nothing to make this situation better, and in fact may make it worse.

Currently, section 36 of the Mental Health Act and the common law, as well as the freedom-of-information and municipal freedom-of-information acts, provide for access to one's records. Under the Mental Health Act, where a request for a record is made, the onus is on the custodian to justify withholding this information if it thinks that is necessary. Bill 159 would repeal section 36 of the Mental Health Act and treat our personal health records as if they were government documents-a fundamentally flawed approach. Access to government records is a policy which promotes democratic values and good government. Access to our health records is a legally enforceable right arising out of the fiduciary relationship between patient and health care provider.

First, there should be no fee for making a request to access one's records. Second, there should be a provision to waive the cost of providing access to one's own records for certain individuals. We recommend that the payment of a fee for copying shall be waived if the individual is in receipt of social assistance or can otherwise demonstrate an inability to pay. Someone on Ontario Works who is applying for ODSP and needs to gather medical information is living on $520 per month. We see some hospitals charge as much as $180 for copying 10 pages of a record. While subsection 47(10) provides for a waiver of the cost of copying records, the criteria are left to regulation. It is not sufficient to simply allow the individual to examine the records for free by attending at the facility. A number of people with disabilities would not be able to participate in this means of access.

Limits on the number of times one could access the same information are problematic. Many inmates and homeless individuals have told us they've obtained copies of records which were subsequently stolen, confiscated by prison guards or simply lost. Rather than using subsection 47(6) to permit the custodian to effectively ignore subsequent requests for more information, there should be a mechanism for the custodian who thinks someone is making repeated and vexatious requests without good cause to apply to the commissioner for an order stating that no further requests for that record be allowed without the leave of the commissioner.

Finally, clauses 44(d) and (e), allowing the exclusion from the access provisions of personal health information of a type prescribed by regulation, or information under the control of a class or classes of health information custodians prescribed by regulation, are overly broad and should be struck. The act provides overly broad powers to exempt significant amounts of information from the access provisions. Similarly, section 48 provides an overly broad and lengthy list of reasons why a custodian might refuse to allow access to one's own record, which are well beyond risks of harm to oneself or to a third party. This is far broader than either the draft Personal Health Information Privacy Act, 1997 or the draft Health Sector Privacy Rules. The only recourse available when denied access is for the individual to complain to the commissioner. Thus the onus is placed on the individual to prove why they should have access to a record and shifted from the custodian to demonstrate why their withholding the information is justified.

We strongly recommend that the ministry be directed to provide a written justification for each subsection of 44 and subsection 48(1), clauses (b) through (i), including what harms to the patient they are designed to address and alternative measures to address those harms, and publish this information as part of a formal public notice and comment process. As well, subsection 89(6) should be deleted, restoring the provisions of section 36 of the Mental Health Act, and thereby placing the onus on custodians to demonstrate to a neutral third party that withholding of access is necessary to prevent serious harm.

Finally, turning to the remedies for breaches, I'll be brief, because there aren't really any effective remedies here. Without Bill 159, individuals have extremely limited remedies: complaints to colleges, and perhaps, for the moneyed few, suits in malpractice, assuming the individual is a regulated health professional. However, Bill 159 only provides for a complaint to the commissioner. This complaint must be in writing and accompanied by a fee.

First of all, there should be no fee. It is unconscionable that an individual whose privacy has been breached must first pass the bar of being able to pay a fee in order to access the beginnings of a remedy. Assuming you're able to make a complaint, the commissioner has the power under section 68 to make comments or recommendations on the privacy protection implications of any matter that is the subject of the complaint or to make an order to stop the collection of information and to dispose of information collected in contravention of the act. Alarmingly, there is no power to make orders with respect to the disclosure or use of information; just collection and disposal. This is ridiculous. Section 68 must be redrafted to accord the commissioner the power to make orders with respect to disclosure and use, as well as the collection, of personal health information.

Privacy legislation in other provinces includes protections against disclosure with remedies for the individual. Manitoba and British Columbia, for example, have established a tort of privacy, actionable without proof of damages, where a person, wilfully and without claim of right, violates the privacy of another. These provisions value privacy and place paramount importance on protecting personal information. Importantly, they also create an effective remedy for the individual whose privacy was breached. Bill C-6 specifically provides for this situation in subsection 16(c) by providing that the court may "award damages to the complainant, including damages for any humiliation that the complainant has suffered." Bill 159 only provides for quasi-criminal prosecution for breaches of the act, through the offences listed in section 73. These offences are punishable only by a fine on conviction, which is payable to the government, not the individual. Bill 159 provides no authority to award damages to the individual whose information has been handled in contravention of the act.

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The commissioner must be granted powers to award damages to the individual where a breach has occurred, and the bill should also create a tort of breach of confidence without proof of damage. We told you this three years ago, and we're telling you this again. The commissioner herself told you this a few weeks ago. Without effective powers, there is little actual effect in having the privacy commissioner oversee the legislation if it is passed as is.

As well, the commissioner's discretion with respect to whether or not to review a complaint is too broad. Currently, Bill 159 allows the commissioner to decide not to review a complaint "for whatever reason the commissioner considers proper." The procedure for conducting a review is, like so much of the bill, left to regulation, thereby keeping us in the dark about what the review would be.

Last but not least, I would like to express our grave concerns about the protections from liability outlined in section 75. This allows for protection from liability for anything done, reported or said in "good faith" that was "reasonable in the circumstances." The good faith standard is purely a subjective one-my examples and others you will hear in the days to come will readily show that-and the reasonableness standard can be objective or not. The danger from the perspective of people living with HIV and AIDS is that what our community might think is reasonable will be ignored in spite of its relevance. Improper handling of personal health information should only be excused if a reasonable patient with similar health problems and records would understand and excuse them. Therefore, section 75 should be amended to say that a custodian has a defence to the actionable tort of breach of confidence without proof of damages if no damages arose as a result of the disclosure and it was done in good faith and on reasonable grounds in the circumstances. The custodian should have the onus of that proof.

I can't emphasize enough the negative impact that this legislation would have on people living with HIV and AIDS in Ontario. Bill 159 does not adequately protect personal health information. The federal Privacy Commissioner has told you it fails to meet the "substantially similar" criteria. It fails individuals by focusing on health information custodians rather than focusing on the information itself. It permits far too many exceptions to the general rule that personal health information should not be disclosed without informed consent. It unnecessarily complicates an individual's access to their personal health information and makes it too difficult to make changes to that information where there are errors. Finally, it fails to provide the privacy commissioner with the powers she would need to provide real remedies to individuals whose personal health information was improperly handled, or to effectively oversee the legislation.

I thank you for this opportunity.

The Chair: Thank you very much for your presentation. You've timed it perfectly. We appreciate the very detailed recommendations you make in your written brief as well.

CANCER CARE ONTARIO

The Chair: Our next presentation will be from Cancer Care Ontario. Good morning. Welcome to the committee. Again, we have 20 minutes for your presentation.

Dr Ken Shumak: Mr Chair, members of the committee, thank you for the opportunity to appear today before the committee. I'm accompanied by my colleagues, Dr Verna Mai and Dr Eric Holowaty. If there are questions afterwards if there is time, I may call upon them to answer those questions, with your permission. I believe everyone has a copy of my remarks, as well as additional background information related to the presentation I'm going to be making.

Just by way of background, Cancer Care Ontario has the mandate of providing overall cancer system planning and of operating the province's regional cancer centres, the Ontario breast screening program, the Ontario cervical screening program and the Ontario Cancer Registry. Cancer Care Ontario carries out laboratory, clinical, epidemiological and health services research, and we are responsible for establishing provincial treatment guidelines and practice guidelines for cancer. We are also the provincial government's principal adviser on all cancer issues.

Our comprehensive mandate means that there are a number of purposes for which Cancer Care Ontario collects, uses, discloses and stores health information. The protection of personal health information is therefore an issue of significant importance to Cancer Care Ontario. We have a vested interest in ensuring that cancer patients and the public have confidence in the legislative protections that are intended to protect their privacy. If they are confident that adequate safeguards exist, we can then better meet our responsibilities to provide the people of Ontario with timely, high-quality cancer services as close to home as possible.

The Personal Health Information Privacy Act affects a number of Cancer Care Ontario's programs and services. For the purposes of this presentation, however, I'm going to focus on one section of the legislation, section 30 in part VI of the act. This section specifically identifies Cancer Care Ontario as an organization to which health information custodians can disclose personal health information without informed consent. My purpose in presenting today is to explain why this provision is critical to Cancer Care Ontario's ability to provide the people of Ontario with the best possible cancer control services.

We in Cancer Care Ontario strongly support the principle of informed consent. As an organization that treats cancer patients, I think Cancer Care Ontario is in fact particularly sensitive to the importance of a patient's right to control access to his or her health record. Based on my own experience as a physician who treats cancer patients, I can tell you that the stigma that unfortunately is still associated with a cancer diagnosis causes some patients so much anxiety that they do not even want members of their own family to know about their illness. It is their right to make that decision and, as health care providers, we must respect and uphold it.

However, there are some very important programs and activities that require access to personal health information where it is not practical and/or possible to obtain informed consent. Cancer Care Ontario has the mandate to operate such programs. These programs are the Ontario Cancer Registry, the Ontario breast screening program, and the Ontario cervical screening program. The special status accorded to Cancer Care Ontario under Bill 159 is related to the operations of these programs.

The screening programs require access to identifiable health information in order to monitor the effectiveness and quality of the actual screening and to ensure that women return for regular screening. Also, some women who are screened through the Ontario breast cancer program and ultimately have cancer have their cancer diagnosed through other means. From the perspective of quality assurance, it is important that the program know about these diagnoses made by other organizations. In addition, many women receive mammography screening from facilities that are not affiliated with the Ontario breast screening program, and all women have Pap smears from their primary care practitioner or in the hospital, and therefore it is necessary for Cancer Care Ontario to collect this information from other organizations.

I'm going to use the balance of my time to discuss the Ontario Cancer Registry because I suspect most people are not as familiar with the registry and because the rationale for the exemption from informed consent is actually the same across all three programs. As I mentioned before, if there are questions about any of the screening programs, Dr Verna Mai, who is director of screening for Cancer Care Ontario, is here and will answer any questions you might have about those programs.

The Ontario Cancer Registry is a computerized database of information on all newly diagnosed cases of cancer and on cancer deaths. The Ontario Cancer Registry is the largest patient-specific cancer registry in Canada. Since 1964, over one million new cases of cancer have been registered.

The registry in Ontario meets national and international standards for completeness, timeliness and quality of information. It is estimated that approximately 50,000 new cases of cancer will be diagnosed and registered in Ontario in the year 2001.

The process of cancer registration in Ontario is passive, relying almost completely on records collected for other purposes. Close to 400,000 records are submitted to the registry each year. Since 1979, the registry has relied on the same four major data sources: first, hospital discharge summaries and day surgery reports that include a diagnosis of cancer; next, pathology reports that have any mention of cancer; third, the records of patients who are referred either to Cancer Care Ontario's regional cancer centres or to the Princess Margaret Hospital; and finally, information is obtained from death certificates on which cancer has been recorded as the underlying cause of death.

All records except pathology reports are coded at the source and provided to the registry electronically. A limited number of Cancer Care Ontario staff have access to the identifiable information contained in the Ontario Cancer Registry. We have signed agreements with the organizations that submit data to the registry governing the use and disclosure of this data. These agreements place strict limits on the disclosure of identifiable registry data to third parties. There is a formal process through which third parties must make requests for identifiable registry data. In most cases such requests must be approved by the organization that supplied the data to the registry.

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All research proposals are reviewed and approved by an ethics committee, and research that is undertaken using registry data almost always includes at least one investigator from Cancer Care Ontario itself.

The data from the Ontario Cancer Registry predominantly are used to carry out epidemiological or population health research. There are two points I want to emphasize about this type of research. First, to be meaningful, it requires access to the complete population. Further, epidemiological research requires personal identifiers to ensure completeness of the data and to track trends and occurrences over time. A patient's health record, particularly when we're talking about cancer, includes data related to diagnosis, treatment and follow-up care, and those data come from multiple health care organizations. A complete registered cancer case requires all these data to be linked, and that's only possible through the use of personal identifiers. Secondly, the vast majority of epidemiological studies involve people only through the use of surveys or the study of existing data, documents, records and pathology reports. People who are the subject of epidemiological research are, therefore, generally considered to be at no more than minimal risk of harm.

Research based on data generated by the Ontario Cancer Registry can make invaluable contributions to Ontario's cancer control system. Specifically, data are used to predict future cancer trends, including cancer incidence, mortality and survival; to determine future needs for cancer services and cancer professionals; to monitor the effectiveness of cancer prevention, early detection, treatment and supportive care programs; to identify genetic, lifestyle, occupational, environmental and other risk factors; and to evaluate the effectiveness of cancer screening programs.

Let me cite some examples of important knowledge that has been gained as a result of the Ontario Cancer Registry: first, the existence of significant variation in patterns of cancer treatment and in the associated outcomes across the province. The ability to identify such differences is the first step in fixing underlying problems. Through record linkage studies, important links between occupational exposures and cancer risk have been identified. These findings have usually led to the development of safer regulatory standards and the institution of more effective preventive practices, such as dust control and personal protective equipment.

Because of the completeness of the registry and the availability of sufficient identifying information, the long-term follow-up of very important clinical trials becomes possible: for example, the national breast screening study started in the early 1980s. To this day we are able to continue to track the occurrence of breast cancer and deaths through periodic linkages with registry data, and that produces clearer estimates of the benefits of breast screening.

As I mentioned previously, complete data on newly diagnosed cases of cancer and on cancer deaths is critical for this type of research, and, in turn, the obtaining of complete data is entirely dependent on having access to identifiable health information.

The privacy commissioner herself acknowledged as much in her presentation to this committee earlier this month. To quote the privacy commissioner, "There is only one subset of research that truly does require personal identifiers, and that's the narrow class of epidemiological research."

Requiring informed consent for identifiable health information submitted to the Ontario Cancer Registry jeopardizes the quality of data contained in the registry for two reasons. First, obtaining informed consent would be the responsibility of health care providers who, in addition to obtaining consent to treat, would have to educate patients about the Ontario Cancer Registry. This would be time-consuming, and it is unlikely that physicians and other clinicians would be willing to routinely obtain consent. Many cancer cases therefore would be lost. Second, if even a small percentage of patients chose to opt out, the registry data would be biased, and in our opinion therefore would be of limited use.

The same two arguments can also be made in support of the requirement for personal identifiable health information by both the Ontario breast screening program and the Ontario cervical screening program. Let me quote an example. In Germany, where informed consent was required in the 1980s and 1990s, cancer registries collapsed and epidemiological research in that country was halted.

I want to give you a few examples of the type of work that will no longer be possible if we didn't have a reliable provincial cancer registry.

We wouldn't be able to evaluate whether the treatment guidelines that helped to ensure that there's a high standard of care throughout the province are rapidly being adopted throughout Ontario, and we hope eventually manifesting as higher Ontario-wide survival rates or better quality of life in patients who have cancer.

We wouldn't be able to determine the prevalence of hereditary cancers in our population or to study the natural history of these cancer patients and their high-risk families, including access to and utilization of effective counselling and treatment services.

We wouldn't be able to study whether living close to sources of environmental pollution increases the risk of cancer.

We wouldn't be able to evaluate whether public health policies on prevention are effective.

We wouldn't be able to estimate whether the costs of cancer care, particularly the length of hospital stay during the initial and the terminal phases of care, varies much by the location where the care is provided. This information is very important in identifying opportunities for conserving the limited cancer care resources we have in this province.

We wouldn't be able to study whether current or future prescription drugs or medical devices inadvertently cause cancer. As an example, Cancer Care Ontario recently completed an assessment of the possible association between antidepressant medication and breast cancer risk.

Given the overall advantages to cancer patients and to the entire population, because all people do have a risk of developing cancer, and the minimal risks that epidemiological research poses to individuals, we believe the benefits that the Ontario Cancer Registry, the Ontario breast screening program and the Ontario cervical screening program provide justify the exemption from informed consent.

It is primarily for this reason that Cancer Care Ontario is afforded special status under section 30 of the Personal Health Information Privacy Act, and it is for this reason that I ask members of the committee and those who are involved in the drafting of the legislation to continue to support the inclusion of such a provision in the final draft of the bill.

Thank you for the opportunity to make these comments.

The Chair: Thank you very much. That leaves us about five minutes for questioning.

Dr Shumak: Can I ask my colleagues to join me should there be questions?

The Chair: Feel free, please. About two minutes per caucus.

Mrs Lyn McLeod (Thunder Bay-Atikokan): I appreciate the concerns you have around the importance of accessing identifiable information. Are you suggesting that what have been considered by some to be fairly limited restrictions on your access to that information for research purposes are still too restrictive for what you need, or is the act as currently drafted suitable, in your view?

Dr Shumak: I was speaking in support of the provision in the act that allows us to have that privilege.

Mrs McLeod: When you talk about the agreements you currently have in the absence of legislation, the agreements you have with those who provide you with data and those agreements for the disclosure to third parties, what kinds of third parties and what limitations are there on the nature of the third party? Would they be exclusively those who would be considered under this legislation to be health care custodians, for example?

Dr Shumak: I'm going to ask my colleague Dr Holowaty, who has the direct oversight of that, to respond to that question.

Dr Eric Holowaty: This would of course only be for research purposes and only in those situations where disclosure is absolutely necessary for the research purpose and where adequate safeguards in terms of personnel practices, database security and physical security are taken by the third party researcher.

There's a fairly extensive assessment that's necessary when researchers apply for access. We expect a thorough protocol. We expect external peer review to assure us of the quality of the science that's being proposed. We expect proper research ethics board review in approval. We have additional reviews within our own agency.

You have within your package, probably at the back, a list of much of the research that could only be published as a result of the Ontario Cancer Registry. As Dr Shumak had said earlier, almost always CCO staff are co-investigators in this research. For the projects that don't seem to have CCO staff listed-and you'll see that-invariably they're behind the scenes, controlling access to the information.

0940

The Chair: I'm sorry, Ms McLeod, we're well over. Ms Lankin.

Ms Frances Lankin (Beaches-East York): Let me perhaps direct my question to the screening programs first and ask for a bit of an explanation as to why the personal identifier is important. I think it's implicit in what you've said, but it would be good to have it on the record.

Dr Verna Mai: Why don't I take the example of the cervical screening program. One of the benefits of an organized screening program, as opposed to just having Pap testing going on that's unorganized or what we call opportunistic, is that we can actually organize the system so that women do not slip through the cracks. They get reminders through their family doctors when they have missed a Pap test for over three years, which is the way we're looking at this.

Some of the main reasons or the main associations that have been found with cases of invasive cervical cancer have been an inadequate Pap test history or an inadequate follow-up of somebody with an abnormal Pap test. So I think that kind of points out how having personal identifiers would allow a cervical screening program to make sure that no women slip through the cracks-

Ms Lankin: Could I ask you why we wouldn't take a perspective where, as a woman patient, when I come in and I'm having a Pap smear and speaking with my doctor, the doctor says, "There's a screening program available. It's very advantageous. Why don't we enrol you in that?" Why wouldn't we ask for that informed consent in that sense?

Dr Mai: If you look at the number of Pap tests carried out in the province each year, and it's well over a million, two million, that would actually be something that would be highly impractical to have each and every time a woman going for a Pap test-

Ms Lankin: No. The first time, you enrol in the program.

Dr Mai: OK. The first time, you enrol. What's written in the legislation with the regulated programs actually would accomplish that in that there would, if I understand it correctly, and I guess the regulations would have to spell this out, be information that would have to be given to women that in fact your information would be part of the program, and it would be part unless they chose not to. My concern is, in doing that, in opting out of the program, the onus is there for the health professional to make clear that the woman understands that if she's not in the program, she's not going to get reminder notices; there won't be a chance for the follow-up needed for an abnormal Pap test.

Ms Lankin: But that would be her choice.

The Chair: Ms Lankin, I'm afraid we've got to move along.

Mr Bob Wood (London West): I wonder if you could tell me why you can't get a representative sample of the whole with the consent of the patients.

Dr Shumak: In order to do what?

Mr Wood: In doing research, you have to get a representative sample of the whole. Why can you not get a representative sample of the whole with the consent of the patients? Obviously, some won't consent. Why can you not get a representative sample the same way pollsters do all the time, for example?

Dr Shumak: I think, and Dr Holowaty may wish to comment afterwards, for certain types of research that would be quite acceptable. Indeed, for certain types of research, representative samples are exactly what would be obtained. But there are other kinds of research in which the entire population is necessary.

Mr Wood: You don't have that now. Those treated only by a physician, you don't have those now, do you?

Dr Shumak: It depends on what you're talking about. If we're talking about the cancer registry data, yes, we collect in the registry information on virtually 100% of patients in this province, regardless of whether they're treated in Cancer Care Ontario centres or elsewhere.

Mr Wood: If they're treated only by a physician, you have access to that information?

Dr Shumak: Yes, because if they have cancer, the data will be in some sort of pathological report or hospital final discharge note-

Mr Wood: No, suppose they never go to hospital.

Dr Shumak: There would still have been a pathology report. Otherwise, the diagnosis of cancer wouldn't have been made. In order to make the diagnosis of cancer, a tissue diagnosis is required. It's at that point that we would get that information, from whichever mechanism of making that diagnosis.

Mr Wood: And why can't you get a representative sample by consent?

Dr Shumak: As I say, for certain types of research we could, but for other types of research it's important that we have all patients. Therefore we're back where we started from, which is that in order to get consent from all patients, for the reasons that I've tried to address, that's an extremely difficult problem, and that would compromise the quality of the research we're doing.

The Chair: Thank you for coming and making your presentation.

Mrs McLeod.

Mrs McLeod: I appreciate that we're working under tight timelines and I don't want to hold the committee up, but I'm wondering, if there are significant outstanding questions, whether or not it's appropriate for us to put them on the record for the research officer perhaps to pursue with the witness outside the committee. I'm thinking just in terms of getting some background information for the future amendment process.

The Chair: I'm sure that would be reasonable, but I don't see why that couldn't be done perhaps when we break at lunch or at the end of the day.

Mrs McLeod: All right. I'm happy to do that.

The Chair: I'm sure the clerk and the researchers could contact them. We have contact numbers and addresses for all the groups appearing before us.

Mrs McLeod: That's fine. So submitting those questions at the break to the research officer would be the best way of pursuing other issues?

The Chair: That would be acceptable. Thank you.

ONTARIO COALITION OF PSYCHIATRISTS

The Chair: Our next presentation will be from the Ontario Coalition of Psychiatrists. Good morning and welcome to the committee.

Dr K. Sonu Gaind: Thank you. We will take half a minute to set up my presentation. Mr Chair, could I just confirm: will we have till 10 past to make a presentation?

The Chair: On my watch I have 9:48, so you'll have till 10:08.

Dr Gaind: I think I'll start the presentation, but maybe we could get this arranged. There are copies of the slides being handed out as well, so if it doesn't end up working for whatever reason, we'll be able to proceed.

My name is Dr Gaind. I am a psychiatrist working in Toronto, and accompanying me is Dr Doug Weir. We're both presenting for the Ontario Coalition of Psychiatrists. The Ontario Coalition of Psychiatrists is a partnership of the Ontario Psychiatric Association and the Ontario Medical Association. It represents approximately 1,500 Ontario psychiatrists.

We're presenting before you today because we obviously have a number of concerns regarding the confidentiality aspects of this bill. We feel that, as drafted, Bill 159 would undermine the ability of Ontario citizens to obtain effective psychiatric care.

We've distilled our concerns down to two main points. The first issue is that psychiatric care and psychotherapy are unique in the provision of any medical services in the requirement for privacy to enable the treatment to occur. The second point is that psychiatric records themselves are unique and separate from other medical records, and recognition should be given in the bill of this issue as well.

We feel the potential for the non-consensual disclosure of personal information, psychiatric records specifically, to the minister, to the minister's delegate, to researchers or to heads of penal institutions would prevent patients from receiving necessary psychiatric care. If you're following along in the handouts, this is on the second page. I'm now at "Uniqueness of Psychiatric Care."

Clearly, patient privacy is important in every aspect of medical care. I believe that's what this committee is meeting on, to hear the different aspects of this. But it is fundamental and necessary to psychiatric treatment in a way that it simply is not for other medical care. Unlike with other medical treatments, healing emotional suffering cannot occur without communication of sensitive, emotional issues. I think this is easy for any of us to imagine. If we put ourselves in the shoes of a psychiatric patient who needs care and we imagine that we are, for example, depressed in the context of a marital breakup or some other issue that comes along in our lives, this is easy to imagine.

We know that at least one in five people in Ontario will experience clinical depression during the course of their lifetime. Looking around this table, that would mean approximately two of us, or more, at some point would be suffering from clinical depression.

The issues we would be struggling with are difficult enough to discuss at the best of times. Who among us would feel comfortable discussing these with our psychiatrist if we realized that our deepest fears, our most private sexual fantasies, any of our other most intimate thoughts could be revealed or shared with a third party outside the therapeutic setting? Trust is required to divulge such intimate fantasies, fears and thoughts and to discuss disturbing emotions or embarrassing information.

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This is distinct from any other medical service. I may well have emotional concerns about any medical illness. I may have a stigma associated with it. If I was going to my doctor, concerned I might have HIV or AIDS, there are many emotional issues around that. However, I will go to my doctor, I will have various investigations performed, I will be diagnosed and I will still be treated. The same simply does not hold true for psychiatric treatment. As the Canadian Psychiatric Association has stated, without confidentiality there can be no trust, and without trust there can be no therapy.

It's important to point out that the trust which is required for therapy to proceed is not simply that disclosure does not take place but that disclosure cannot take place. The potential for non-consensual disclosure is enough to undermine any attempt at psychiatric treatment.

The other issue I'd like to point out is that, as currently stated in Bill 159, the very patients we most need to help will be the ones who are most disadvantaged by the ability of the minister, the minister's delegate or other third party individuals to obtain psychiatric records. For example, patients who have been traumatized through abuse-sexual abuse, psychological abuse, physical abuse-have difficulty trusting individuals at the best of times. Patients who have serious psychiatric illnesses such as schizophrenia or manic depression may also experience symptoms of paranoia or persecutory ideation. These people will not be able to feel comfortable in any setting unless it assures them of confidentiality.

I'll just take one second to catch up with the slides.

In summary, the current provisions for potential non-consensual disclosure particularly disadvantage, ironically, those most in need of psychiatric treatment.

The next issue I'd like to raise regards the uniqueness of psychiatric records. Once again, psychiatric records are very different from medical records, and this needs to be reflected and accounted for in the legislation. Psychiatric records reflect the process of therapy. The process of therapy includes exploring the patient's fantasy world and fears. It is not based in the real world. As a result, the actual records themselves do not reflect the factual information and historical data that are present in other medical records. The psychiatric record is a reflection of the patient's subjective and unconscious world, not of the real world. Such psychiatric records can serve no purpose in managing the health care system. They are simply memories of the patient's mind, if you wish, and no third party has a right to look at that without very good reason.

The other issue is that the nature of the records is highly subjective, impressionistic and very context-sensitive to the situation of therapy. Taking those records outside of therapy and examining them is simply fraught with misinterpretation.

I've tried to summarize the key points here. There is considerably more contained in the brief we've handed out. What I would like to do is also provide you with the views of many other associations and legal bodies, nationally and internationally.

The Canadian Psychiatric Association recently passed a position statement on confidentiality of psychiatric records. This was passed in December 2000 and will be printed in April 2000; it's currently at the press. I'll just read the first part: "Confidentiality is a prime condition in enabling the establishment of an effective therapeutic relationship. In no other medical specialty is so much private information required for establishing an accurate diagnosis and treatment plan." I'll skip the rest of that quote, but just remind you of the other point of that position statement, which is that without confidentiality there can be no trust, and without trust there can be no therapy.

The World Psychiatric Association in 1977 adopted the declaration of Hawaii, which is, "A therapeutic relationship between patient and psychiatrist is founded on mutual agreement. It requires trust, confidentiality, openness, co-operation and mutual responsibility."

The Supreme Court of Canada in 1999, in the case of R. v. Mills, stated: "In cases where a therapeutic relationship is threatened by disclosure of private records"-threatened by disclosure of private records-"security of person and not just privacy is implicated." We're now affecting well-being, and the Supreme Court of Canada has recognized this.

The United States recently passed, in December 2000, a bipartisan act called the Health Insurance Portability and Accountability Act. It's quite a lengthy act, but regarding psychiatric records it specifically identifies the increased need for privacy of patients' psychiatric information. There are more stringent rules in place for psychotherapy notes, requiring patient authorization for disclosure. When the medical director of the American Psychiatric Association went to the White House to hear discussion on this act, the President specifically acknowledged the need for strong privacy protections for psychiatric patients.

Again in the US, the United States Department of Health and Human Services, which was instrumental in drafting the regulations that were in the act I just showed you, wrote, "Psychotherapy notes do not include information that covered entities typically need for treatment, payment or other types of health care operations." In this context, "covered entities" refers to the health plans themselves. The closest analogy we would have here would be the Ministry of Health. Basically, they're saying the payee has no business looking at these notes because they're not relevant to what the payee is doing.

Even prior to the passage of the act which I've showed you, the US Supreme Court, in the Jaffee-Redmond case in 1999, specifically acknowledged the extraordinary degree of trust necessary for psychotherapy treatment to proceed, and they ruled that communications between psychotherapists and patients are protected by absolute privilege in federal court. They also noted that in 50 states there are specific issues which protect psychiatrist-patient privilege. They've also accorded psychotherapist-patient relationships the same status as the solicitor-client relationship with respect to privilege.

All those other bodies may add some legitimacy to what we're saying here, but frankly I think the words of real people who may be affected are probably more telling, and we hear them in a different way.

This is from Janna Smith, an author in the States: "The bottom line is clear. If we continually, gratuitously reveal other people's privacies, we harm them and ourselves, we undermine the richness of the personal life and we fuel a social atmosphere of mutual exploitation. Let me put it another way: Little in life is as precious as the freedom to say and do things with people you love that you would not say or do if someone else were present. And few experiences are as fundamental to liberty and autonomy as maintaining control over when, how, to whom and where you disclose personal material."

Ms Smith is talking about people we love. It is routine for patients to come to their psychiatrists and say, "I'm telling you something I've never told anyone in my life, even my closest confidant." Imagine what we're taking away from these patients.

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In managing the health care system we do recognize that certain information may well be required. Once again, this information is based in fact, and the factual information which is required can be obtained already without non-consensual access to the intimate information of psychiatric records. For example, diagnoses can be tracked, services provided can be accounted for and treatment can be tracked. Investigating fraud on the part of the physician or anyone else can also be done currently. In any case, where there are legal proceedings, records can always be subpoenaed. There is no absolute confidentiality of psychiatric records. They can be subpoenaed in legal proceedings. However, that is the test which needs to be passed, even here. We do not need to loosen access to intimate psychiatric records to achieve any of these goals. Please remember that protection of patient privacy and of the psychiatric record is not an issue for the psychiatrist. It's not in our interests to be presenting this to you here. This is an issue in the interests of the patients. There literally is no self-interest in this instance.

If we look at the harm-versus-good equation, if we look at the harm caused by potential access by third parties, there is significant harm which can and will be caused to all Ontario patients and no good will actually be provided. Psychiatric records do not contribute materially to the management of the health care system.

The Canadian Psychiatric Association has recommended that "precautions be taken to ensure release of any information without the express consent of the patient is required by law and judged by an impartial authority...." That is the same test we would ask this Legislature to pass. Subsection 31(3), in which the minister is directed to consider the public interest and privacy interest of the individual prior to issuing a direction requiring disclosure, simply does not afford the same protection to patients' psychiatric records as the legal system does.

Regarding research, the Canadian Psychiatric Association's position, which we share, is that, "Certain anonymous or impersonal data may be used for" various purposes, including "ethical research." There is no need for patients with identifying data, especially psychiatric records and psychiatric patients, to have their identities revealed to any researcher.

What we are asking for in Bill 159 is explicit recognition of the unique nature of psychiatric records compared to other medical records. We are also asking that release of psychiatric records requires the individual's consent, even for the situations I've listed here: subsections 30(4) and (5), sections 31 and 32, and clause 33(b). Those are the sections allowing the minister or the minister's delegate, the head of a penal institution and researchers access to information without the patient's consent.

Thank you very much, and I believe we have some time for questions.

The Chair: We have about two and a half minutes for questions from one caucus.

Ms Lankin: I appreciate the thrust of what you're saying: that however this bill ends up being drafted, there needs to be unique treatment of psychiatric records, that they're apart and separate and need to be treated differently.

Dr Gaind: Yes.

Ms Lankin: Do you have any comment on the bill as it stands in terms of the thrust or the balance that's contained? Much of what we are hearing is the debate between the need for management of the health care system and/or appropriate epidemiological research versus the right of privacy, irrespective of the type of medical records, the right of individual privacy and the premise that any disclosure should be based on informed consent. I understand the particular case you're making, setting out and apart from that psychiatric records. Do you have an overall comment from your perspective on the balance we're seeing in the bill as it's written? Have we got the right balance, or do we need to rethink it?

Dr Gaind: I can't comment on that. The reason we didn't focus on it is that I'm aware other organizations are likely presenting their views on that, including medical and other associations. In the brief I've quoted the Hippocratic oath. I'll start my answer by quoting that. In it, every physician has sworn "that what I may see or hear in the course of treatment or even outside of the treatment in regard to the life of men"-admittedly they were sexist back then-"which on no account one must spread abroad, I will keep to myself, holding such things shameful to be spoken about."

Basically it's saying that for any medical interaction we need to respect the privacy of the patient and the information they're giving us, and to respect their decision in order to share that information with others. So I do feel that the ability of third party access is too broad. Again, though, the difference for psychiatric treatment is that the treatment simply can't take place unless privacy is there.

The Chair: Thank you, gentlemen. We appreciate your taking the time to come before the committee this morning and making a presentation.

COLLEGE OF MEDICAL RADIATION TECHNOLOGISTS OF ONTARIO

The Chair: That takes us to our next group of presenters, the College of Medical Radiation Technologists of Ontario. Good morning and welcome to the committee.

Ms Sharon Saberton: Good morning. My name is Sharon Saberton. I'm the registrar with the College of Medical Radiation Technologists of Ontario. With me today is our president, Sheila Robson, and our legal counsel, Debbie Tarshis.

The College of Medical Radiation Technologists of Ontario, or the CMRTO, as we refer to it, is the regulatory body for medical radiation technologists in Ontario. Our mandate is to serve and protect the public interest through self-regulation of the profession of medical radiation technology.

The CMRTO supports the intention and spirit of Bill 159 in its effort to address the lack of consistent rules covering what personal health information can be collected and how that information can be used and disclosed. The CMRTO believes the establishment of duties and mechanisms to protect the confidentiality and security of personal health information and the privacy of the individual to which the information relates will strengthen the public's and the profession's understanding of confidentiality of personal health information.

The agenda we wish to present today for our presentation includes our major conclusions that health regulatory colleges should not be defined as health information custodians, because they are governed by legislation which is intended to be a complete code. To add an additional layer of legislation would interfere with the CMRTO's ability to regulate the profession in the public interest. Our oral presentation will describe why we have come to this conclusion.

In the written submission, we are making some recommendations that specific amendments be made to Bill 159 to maintain the integrity of the regulatory processes established for the colleges under the health professions procedural code, schedule 2 to the Regulated Health Professions Act.

Why health regulatory colleges should not be defined as health information custodians: The CMRTO has been established under the Regulated Health Professions Act, RHPA, and the Medical Radiation Technology Act, MRTA, to regulate the practice of medical radiation technology and to govern medical radiation technologists, with the object of serving and protecting the public interest. In accordance with the provisions of RHPA and MRTA, the CMRTO has the responsibility to investigate complaints, conduct investigations, gather information about a member's professional conduct or capacity, conduct discipline hearings and fitness-to-practise hearings to determine whether a member has committed an act of professional misconduct or is incompetent or incapacitated, and to implement a quality assurance program.

Given that medical radiation technologists are involved in patient care and treatment, many of the activities of the CMRTO which relate to investigating and assessing the practice of members of the CMRTO will involve personal health information of patients. Under many circumstances, the CMRTO collects and uses personal health information with the patient's consent. Under certain circumstances, the CMRTO collects and uses personal health information without the patient's consent; however, it is necessary to do so in order to protect the public from harm caused by a member's incompetence, incapacity or professional misconduct. In other words, the purpose for which the CMRTO has access to personal health information of a patient is to assess and evaluate the practice of its members.

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In light of the confidential nature of all the information received by the CMRTO, including personal health information, the RHPA imposes a duty of secrecy on every person employed, retained or appointed for purposes of the administration of the RHPA and the MRTA, and every member of its council and committees, subject only to certain limited exceptions-section 36 of the RHPA. The health professions procedural code, schedule 2 to the RHPA, provides certain rules for collection and disclosure of information in the context of the proceedings authorized under the code. For example, if the CMRTO receives a complaint, the complaints committee is obliged to conduct an investigation. The investigation will frequently involve the collection, use and disclosure of personal health information from the complainant, the member and others.

The RHPA and the code provide rules for the collection, use and disclosure of information, including personal health information, to permit the regulation of members of the CMRTO. The rules under RHPA have been drafted to protect the public from practitioners who are incompetent, act in a manner that constitutes professional misconduct or are incapacitated. The CMRTO believes the rules governing the college regarding the collection, use and disclosure of information, including personal health information, are appropriate in light of the CMRTO's regulatory role. The CMRTO also believes the secrecy provision of the RHPA ensures that patients' personal health information, as well as other information collected and used by the colleges to further their legislated objectives, is protected from disclosure.

The statutory framework created by the RHPA, the health professions acts and the code is intended to be a complete code to govern the regulation of health professions by regulatory colleges. To add Bill 159, an additional layer of legislation which is inconsistent, and in some cases conflicts, with this statutory framework will interfere with the CMRTO's ability to regulate the profession of medical radiation technology in the public interest.

On page 5 of the written submission, I provide two examples of inconsistency or conflict between the RHPA and Bill 159.

There are provisions of the code which specifically override confidentiality of health records in other legislation. Subsection 76(4) of the code, which relates to the powers of an investigator appointed under the code, provides that section 76, the power of an investigator, applies despite any provision in any act relating to the confidentiality of health records. The purpose of this provision is to permit an investigator to obtain information about a member's practice to determine whether a member has committed an act of professional misconduct or is incompetent.

How will an investigator be able to carry out his or her legislated powers under the code and comply with the rules for collection of personal health information under Bill 159?

A similar problem arises under section 82 of the code, which deals with an assessor appointed by the quality assurance committee and his or her powers to assess a member's practice. Subsection 82(5) provides that section 82 applies despite any provision in any act relating to the confidentiality of health records. The purpose of this provision is to permit quality assurance assessors to have full access to information in respect of the care of patients or of the member's records of the care of patients, so that an assessment of the member's knowledge, skill and judgment can be carried out.

How will an assessor be able to both carry out his or her legislated powers under the code and comply with the rules for the collection of personal health information under Bill 159?

The CMRTO believes the inconsistencies and conflicts between the RHPA, the health profession acts and the code on the one hand and Bill 159 on the other will interfere with the ability of the CMRTO and the other colleges to fulfill their regulatory functions and public protection mandate.

On page 6 of the written submission, we have some recommendations.

The first is that a college, within the meaning of the Regulated Health Professions Act, 1991, be excluded from the definition of "health information custodian."

The second is that section 11 of Bill l59 be amended by adding the following new subsection:

"(4) In the event of a conflict between the Regulated Health Professions Act, a health profession act and the health professions procedural code on the one hand and this act on the other hand, the Regulated Health Professions Act, the applicable health profession act and the health professions procedural code prevail."

Third, to the extent that it is desirable to extend certain principles set out in Bill 159 to the health regulatory colleges, this should be accomplished by amendments to the Regulated Health Professions Act as part of the five-year review of that act.

In summary, there are several provisions of the bill which CMRTO recommends be amended whether or not the regulatory colleges are included as health information custodians. These are outlined on pages 7 to 12 of this submission.

Thank you for this opportunity to make this submission to the standing committee.

The Chair: Thank you very much. That affords us time for questions, approximately three minutes per caucus. We'll start with the government.

Mr Wood: I have a couple. Do you have the powers to subpoena?

Ms Debbie Tarshis: Yes.

Mr Wood: So why do you feel you need powers in addition to that? In other words, why wouldn't you just use the power of subpoena where you're doing an investigation?

Ms Tarshis: Under Bill 159, although there is discretionary disclosure, it would undermine the mandatory obligations with respect to those specific powers.

Mr Wood: Could you explain that a little more simply, please?

Ms Tarshis: Sure, I'll try. Currently, there is a discretionary power under section 36 of Bill 159 to disclose personal health information to an investigator, for example, or to others authorized under other legislation. It is discretionary disclosure to health information custodians.

Under the RHPA, the investigators have mandatory powers or powers with which one is obliged or required to comply. There are other provisions under Bill 159, such as the duty of confidentiality, that would conflict with the powers of an investigator under the RHPA and the health professions procedural code. Since under section 11 of Bill 159, if there's a conflict between a provision of Bill 159 and a provision of any other act, the provisions of Bill 159 override, this would create a conflict between those particular obligations.

Mr Wood: What I'm really coming to is this: if you're going to access my personal health information without my consent, do you think it's reasonable that a third party might have to approve that, other than the college?

Ms Tarshis: I'm sorry, I'm not understanding-

Mr Wood: If the college is going to access my personal health information without my consent, do you think it's reasonable that a third party, other than the college, should decide whether or not you have the right to do that?

Ms Tarshis: Who is the third party that you're-

Mr Wood: Whoever you get your subpoena from, who I presume is the court.

Ms Tarshis: This isn't the only mechanism that is used with respect to investigations and assessments.

Mr Wood: I'd like you to focus in, though, on the situation where you want my records and I'm not consenting; either you can't find me or I have declined my consent. Do you think the college should be able to do that on its own, or do you think it should have to go to a third party to get permission to do that?

Ms Tarshis: Because it has been set up in the public interest with the regulation of health professions, which is in the public interest, I think the response of the college would be that there should be the authority to proceed on that basis on their own, without necessarily each time obtaining a subpoena for that purpose.

Mr Wood: You see no conflict between being an investigator and an adjudicator at the same time?

Ms Tarshis: The investigator isn't the adjudicator.

Mr Wood: No-you are. You're deciding whether or not, without my consent, you're going to access my health records. You're the investigator and the adjudicator, surely.

Ms Tarshis: Not really, because there is-

Mr Wood: Who's adjudicating the question, then, if you aren't?

Ms Tarshis: There are separate committees that then carry out the adjudication, once an investigation is complete.

Mr Wood: No, but the college is doing both, is it not?

Ms Tarshis: In the overall sense of the term, yes, but there are quite distinct committees that carry out the investigatory functions, as opposed to the decision-making functions, such as there is a discipline committee that has public members and professional members appointed to it that has absolutely nothing to do with the investigatory process. The investigatory process is carried out either by investigators appointed by the college or, more broadly, by a complaints committee, for example, that is quite separate and distinct and where information is not shared between the complaints committee and a discipline committee.

The Chair: Thank you, Mr Wood. Mrs McLeod.

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Mrs McLeod: I appreciate your presentation, because I think you've really raised what has to be a central question for us as we look at this legislation, and that's the consistency or otherwise of this legislation with the operation of all of the regulated colleges.

My first question is, can I assume that, as a college, the investigator's ability to access health information would only be extended under conditions where a complaint has been lodged and only specifically in relation to that complainant?

Ms Tarshis: That is one of the principle situations. In addition, the college receives mandatory reports under certain circumstances which would, or could, trigger an investigation. So if there were mandatory reports filed in connection with sexual abuse, that would be another situation. When employment is terminated as a result of professional misconduct, incompetence or incapacity, that would also lead to a requirement by the employer to file a mandatory report. So it is also possible that in addition to the complaints mechanism of a matter coming to the attention of the college, it could come vis-à-vis a mandatory report.

Mrs McLeod: So those latter two situations would be essentially situations where you would be accessing information without consent of the individual involved.

I have a lot of concerns about Bill 159 as it's drafted, and one of those areas of concern is the limitations on the power of the commissioner to investigate complaints, which I think ties in to one of your concerns about inconsistency with the colleges' investigatory powers. But I'm also a bit concerned about your recommendation that the colleges simply be excluded from the legislation. If health privacy legislation goes ahead and the colleges are excluded, and they do represent the majority of the health information custodians, don't we have a tremendously confusing situation in terms of the practitioners, who would essentially have two very different sets of rules to operate under?

I guess my question is, wouldn't it be preferable, if we are to have health privacy legislation in Ontario, to make sure that legislation is consistent with the codes the colleges are operating under, rather than exclude the colleges?

Ms Tarshis: By excluding the regulatory colleges, one would not be excluding the health care practitioners from the operation of Bill 159.

Mrs McLeod: But we'd put them under two different sets of rules, wouldn't we?

Ms Tarshis: I don't believe so. I think their collection, use and disclosure of health information would be governed by Bill 159. The extent to which the regulatory colleges were governed by Bill 159 would be excluded. However, health regulatory colleges would not be totally out of the picture, to the extent that there is a provision dealing with recipients of personal health information, and even with excluding the regulatory colleges as health information custodians, they would still be governed by the recipient provision and therefore there would still be those kinds of restrictions that were dealt with in the recipient provision under Bill 159 which would continue to govern the regulatory colleges.

In addition, the RHPA is currently under a five-year review, and to the extent that some of the principles aren't addressed through the secrecy provision in section 36 of the RHPA, there would be an opportunity to make those amendments in a consistent fashion to the RHPA.

Mrs McLeod: That's very helpful.

The Chair: Thank you. Ms Lankin.

Ms Lankin: Can you explain to me how, as a recipient, you would be governed by the recipient provisions, and what protection that would provide to an individual's health information?

Ms Tarshis: If you look at subsection 24(3) of Bill 159, it provides that "a person to whom a health information custodian discloses personal health information relating to an individual ... shall not use or disclose the information for any purpose other than, (a) the purpose for which the custodian was authorized to disclose the information under this act...." There are a number of other exceptions, but "a purpose authorized under some other law" is one other exception.

So, for example, the RHPA colleges, by virtue of that provision, since they do receive most of their health information from other health information custodians such as hospitals and independent health facilities, would be governed by that particular provision and obviously could not use the information other than as permitted by their own legislation.

Ms Lankin: In the situation where someone files a complaint, obviously it would be easy enough to get consent in that circumstance, so it really is the mandatory reports that become problematic. Can you tell me, in a situation where a health practitioner has been terminated and there is a reason of misconduct, why you would need access to an individual's identifiable health information record?

Ms Tarshis: I'd like to backtrack for a minute. In terms of complaints, I'm not sure that assumption of getting consent is always the case, because in some situations it may be that the complainant is desirous of not having the full picture before the college. So there may not be consent to disclosure of certain personal health information that would be relevant to the complaints committee having the full picture of what actually transpired.

But to get to your second question-

Ms Lankin: Presumably, if I'm trying to say, "This person has done me wrong," I want the facts out. Maybe you could be a bit more explicit. We just had a presentation from the psychiatrists in the province. Do you think access to psychiatric records and the detailed records there is necessary in terms of full disclosure of health information to you?

Ms Tarshis: I would think it would be very unlikely for this particular regulatory college, because of what it does, that that would be an issue, in that medical radiation technologists take X-rays and do nuclear medicine procedures. Now, in the context of radiation therapy it may be relevant, but by and large I would think that for this particular college one would not be expecting to see psychiatric records as any relevant part of the investigation.

The Chair: Thank you. We appreciate you coming before us here this morning.

COLLEGE OF NURSES OF ONTARIO

The Chair: Our next presentation will be from the College of Nurses of Ontario. Good morning and welcome to the committee. We have 20 minutes for your presentation.

Ms Mary MacLeod: Good morning, Mr Chairman, honourable members. I am Mary MacLeod, president of the College of Nurses of Ontario. Anne Coghlan, who is the executive director, was to join me this morning, but as she is stuck in Sudbury-her flight can't take off because of the winds-Bill Campbell, who is manager of policy at the College of Nurses, has agreed to join me in this presentation.

The College of Nurses is a regulatory body for nurses in Ontario. We have approximately 140,000 nurses-RNs and RPNs-who are members. I would like to thank you for the opportunity to make a submission to the standing committee on general government on the proposed personal health information legislation.

As you will see in the document that's being circulated, we have some recommendations which we have bolded throughout the document. I have those recommendations here in front of me this morning, and I'll try to give you some examples and some context around those recommendations as they are put forward.

The College of Nurses supports the general principles of Bill 159. The college applauds the government's efforts to protect the personal health information of the people of Ontario. In general, the proposed legislation supports ethical nursing practice and respect for the confidentiality of personal health information.

However, we have specific recommendations for amendments to this bill that we believe will strengthen the protection of privacy of personal health information as well as balance the need for the protection of privacy of personal health information with the public protection mandate of health regulatory colleges. I will highlight some of these recommendations made in our written submission.

The first is that colleges should not be defined as health information custodians. A college within the meaning of the Regulated Health Professions Act should not be defined as a health information custodian under Bill 159. If Ontario's health regulatory colleges were to be so defined, it would seriously compromise our ability to fulfill our public protection mandate through investigations, discipline, fitness to practice, and quality assurance processes.

In order to carry out the College of Nurses' and the colleges' public protection objectives, the rules respecting personal health information remain contained within the Regulated Health Professions Act and the health professions procedural code. The College of Nurses is bound by and carefully adheres to the confidentiality requirements in the RHPA. Regulatory colleges do not provide client care and they do not create personal health records. The only reason the college collects, uses or discloses personal health information is to use as evidence in quasi-judicial proceedings. This evidence assists the College of Nurses to perform its regulatory functions in order to protect the public from incompetent and incapacitated practitioners.

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The RHPA and the code are a complete legislative framework which regulates the governance of health professionals in Ontario. The RHPA enables the college to effectively carry out its regulatory and public protection mandate while at the same time ensuring the appropriate level of protection of personal health records.

The College of Nurses has worked with numerous pieces of legislation, including the Health Disciplines Act, the RHPA and the Nursing Act. However, we find this legislation to be as cumbersome and difficult to interpret as this bill. From a practical perspective, it is imperative that revisions to the bill reflect an in-depth understanding of what health regulatory colleges do and how we do it.

Let me give you two examples of how being governed by a combination of Bill 159 and the RHPA would put colleges in an impossible position with respect to the collection, use and disclosure of personal health information and would make unworkable the task of carrying out investigations and hearings responsibilities.

Here's the first example: an employer has reason to believe that a nurse has abused a client and reports the alleged abuse to the College of Nurses. The college would then follow statutorily defined investigations and possibly hearings procedures. Investigation procedures would likely involve following up with the employer and requesting copies of the client's personal health records if they are relevant to the allegation of abuse. Bill 159 allows but does not make it mandatory for a health information custodian to disclose personal health information to a college. If Bill 159 took precedence over the RHPA, which it appears to do, an employer is not obligated to co-operate with an investigation by providing relevant personal health information. In fact, Bill 159 may frustrate any type of investigation with respect to abuse or any other type of professional misconduct, incompetence or incapacity if the health information custodian, in his or her discretion, decided not to share personal health information with the College of Nurses. This bill is so confusing that employers and others who have concerns about incompetent or incapacitated nurses may not co-operate with the College of Nurses' investigation unless the college gets consent from each client involved, thereby severely impacting our effectiveness.

Here's another example: the College of Nurses has received a complaint that a member is incompetent, including inaccurate and fraudulent record-keeping. Bill 159 would make it difficult, if not impossible, for the College of Nurses to disclose personal health information to an expert in order to get an expert opinion. Bill 159 would prevent the College of Nurses from using personal health information it obtained, for example, from a whistle-blower who may have obtained it in contravention of Bill 159, no matter how serious the allegation of professional misconduct or incompetence.

Further, the definitions of "proceedings" in this bill are confusing. It would appear that Bill 159 intended to provide an exception to the general rules of disclosure for proceedings. "Proceedings," as defined, however, do not include meetings of or investigations by college committees such as the complaints and executive committees. In those investigations, they often need to disclose information to third parties such as experts in order to obtain opinions as to whether a member is incapacitated or an act of professional misconduct or incompetence has taken place.

In addition, Bill 159 requires that before using or disclosing personal health information, a health information custodian has to take reasonable steps to ensure that the information in the record is accurate, complete, and not misleading. If, as a health information custodian, the College of Nurses were to take such action, it would supersede the role of the college's statutory decision-making bodies whose tasks include reviewing records in their original format.

For all of these reasons, the college recommends that a college within the meaning of the RHPA not be defined as a health information custodian.

Other suggested amendments to Bill 159 are as follows:

The RHPA should prevail. The College of Nurses recommends that in cases where provisions of Bill 159 and the RHPA respecting confidentiality conflict, the RHPA prevail. Otherwise, the College of Nurses' ability to protect the public against incompetent or incapacitated nurses will be impaired, whether or not the College of Nurses is defined as a health information custodian under this bill. The examples I have highlighted give some indication as to the obstacles that will be created.

Consent on behalf of a child under age 16: Bill 159 intends to give a parent of a child who is under 16 years the right to consent to the collection, use or disclosure of the child's personal health information except where the information relates to treatment to which the child personally consented. CNO does not believe this is the appropriate test. A child may not have been capable of giving consent to treatment when the treatment took place; however, years later that child may be capable of determining whether a third party should be entitled to obtain, use or disclose his or her personal health information. The appropriate test should be whether the child is capable of determining who should have access to his or her record or of consenting to the collection, use or disclosure of his or her record.

The nurse-client relationship cannot be effective unless a client trusts the nurse enough to be forthcoming about concerns, symptoms, habits and lifestyles. This exception to the consent rule is so broad that it would prevent open communication by the client and harm the nurse-client relationship, which is based on trust and the nurse's implicit promise to maintain client confidentiality.

In conclusion, we recommend that a health regulatory college should not be defined as a health information custodian under Bill 159; that in cases where provisions of Bill 159 and the RHPA respecting confidentiality conflict, the RHPA prevail; and that the test regarding who can consent to the use, collection or disclosure of a child's personal health information be amended.

This concludes my presentation. I look forward to answering any of your questions.

The Chair: Thank you. We have about three minutes for questions from each caucus. We'll begin with the Liberals.

Mrs McLeod: We heard earlier about the concerns of the College of Medical Radiation Technologists in terms of the investigative powers and how different they are under the Regulated Health Professions Act from what Bill 159 sets out. I wonder if you could say a little bit about the protection of health information and the kinds of rules that colleges put in place to ensure that confidential health information is not disclosed by health practitioners, in your case obviously by nurses. I know the colleges do have rules in place. How different would your rules be from what is set out in Bill 159?

Mr Bill Campbell: I'll try and answer a little bit of that. The rules that we have for confidentiality and privacy are spelled out in the RHPA legislation itself, and so the provisions with respect to not sharing information with outside parties are governed by that particular legislation. It is very similar to what's being proposed in the new legislation, but there are some wording amendments that I think need to be made that would make it at least more consistent between the two.

Mrs McLeod: Given the existence of the colleges and their role in taking any disciplinary action against members who are in violation under the act, what's your sense of the need for health privacy legislation in the province of Ontario?

Ms MacLeod: That's probably hard to answer. The colleges use information in order to be able to determine what occurred in a situation, so if a complaint is made for whatever reason-a complaint may come from a fellow nurse who is worried about the practice of another practitioner, it may come from a family member, it may come from a manager. There are various sources where that complaint will occur, but there has to be an ability to quickly get hold of that information about the patients who were involved in the particular incident that's put forward in order that there can quickly be some determination of that by our college committees as restructured by the RHPA, and to act quickly with respect to what's being alleged, either that there is no action taken because of the investigation or that in fact something needs to proceed on to the disciplines level.

Any kind of slowdown in that process may allow, then, a practitioner to be out practising every day who very well should not be out practising. But the information that the college uses is only information that directly relates to those particular incidents, so it's not like you would actually ask for the entire health chart. You're looking for pieces of information that are circulating around a time period in which particular incidents were alleged to have occurred.

Ms Lankin: There are many jurisdictions where health professionals are self-regulated, so this is not an abnormal situation, and there must be other jurisdictions that have brought in health privacy legislation where this conflict has become apparent. Are you aware of how they have dealt with that? Does other jurisdictions' health privacy legislation treat regulated colleges differently than Bill 159 proposes to do?

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Mr Campbell: I'm actually not aware of other legislation. I know in the western provinces there is some new umbrella legislation that's very similar to the RHPA that has been introduced, but I'm not familiar with the content of that legislation.

Ms Lankin: Perhaps we could put that request to legislative research to look at the relationship between regulated health professions and privacy legislation. It would be helpful.

You've alluded to the need to move quickly to look at relevant portions of health records where there has been a complaint, and that complaint can come from a number of sources. You would have heard the previous college's presentation and my question about why you would not be able to go to the patient and ask for consent. Surely if the patient felt that there had been something wrong and/or even if it was on the advice of another health professional that the complaint came forward, they would want to see that investigated. Why would that not be a reasonable route for the college to go?

Ms MacLeod: If a complaint comes from a public member, then certainly I think they would then give consent for that information because they are making a complaint about a particular situation.

I think what sometimes occurs with regulated colleges is there's a series of incidents and events that lead up to some concern, usually by the employer or the employees who work with that individual regulated practitioner. So it may very well be a series of things that have happened over a series of months. It may be sometimes things that have happened over a series of years. There may have been follow-up with the individual practitioner at the time but no pattern of improvement has occurred. So to try and go back and track each individual patient where there was some incident that happened would cause an incredible amount of time to pass in order to try, even if we could, to contact those particular clients.

One might be medication incidences regarding giving patients medications and maybe not signing off incident records. Certainly, over time a nurse can be re-educated and coached regarding the need to sign off medications as they give them. But if there was, say, a pattern of that and that was brought toward the college, then what we're looking for is the medication records to show whether that nurse has indeed followed the policies and procedures of their particular institution, and when they haven't, what kind of problem that causes.

If we had medications that a nurse gave out on a ward that may be 30 or 40 patients and may have stretched over six months, to find each of those clients to get their approval to use that piece of the health record would certainly allow that nurse to continue to practise probably forever until we actually were able to pull that information. Right now what we're able to do is go to the health institutions, pull those particular pieces of the record, show that case, and then move forward on some action regarding that.

Mr Joseph Spina (Brampton Centre): Thank you for your presentation. I wanted to refer to your final recommendation regarding the intention and practical effects of the subsections listed there, which states, "so that a child who is capable of making the decision respecting the use, collection or disclosure has the right to make that decision...."

I was trying to marry that to your comment earlier in your presentation where you talked about a child giving consent to treatment. There's no question about the age of legal consent, but at some point a parent gives consent for treatment, and at another point, I'm gathering from your comment, the child must also. I wondered what some of these other criteria would be that would demonstrate capability on the part of the child not just for the treatment itself, but also for the consent to disclosure.

Ms MacLeod: There are various examples of situations that could come up. Right now my other position, although I'm not the president of the college, is the director of emergency services, and one of the things we do is we use the Consent to Treatment Act to try and determine who can give consent for treatment.

A situation that might occur is that a child comes into the emergency department who has been injured and is unconscious. Because of that, the child is unable to give consent even though they may be well able to do that-if they're unconscious, they can't. What might happen then is that a family member, a parent in particular, would give consent for a particular treatment. Six months or a year later, Bill 159 would allow the parents to give consent to that information being given out rather than going back to the particular child, who is now well and capable of deciding whether they want that information disclosed.

Another example would be, depending on how you frame the terminology "treatment record," if a child had been injured because they were at a party and alcohol was involved and they came into the emergency department and needed some type of treatment, and because they were capable were able to give that consent. If at the same time they told the ER physician and nursing staff that there were alcohol and drugs involved in the particular situation that caused that injury, you'd want to make sure the patient's confidentiality that they have with the providers is not open to the parents then coming along and asking for that treatment record. If those incidents that surrounded the actual treatment were disclosed to a parent, then I'm sure that child would say, "Next time, I'm not going to tell you all the stuff that surrounded my injury because you take that information and you don't keep it private and confidential; you in fact give it to my family members. So now I'm going to be very careful when I come for treatment exactly what I tell you." We're only able to treat people if we know all the facts.

The Chair: I'm afraid we've run out of time, but thank you very much for the presentation you made before us here this morning.

TORONTO ACADEMIC HEALTH SCIENCE COUNCIL

The Chair: Our next presentation will be from the Toronto Academic Health Science Council. Good morning and welcome to the committee. We have 20 minutes for your presentation.

Dr Jack Williams: Good morning, Mr Chair, honourable members. Gail Czukar, general counsel from the Centre for Addiction and Mental Health; David Streiner, assistant vice-president, research, from Baycrest; and I welcome this opportunity to present before you. We come as representatives from the Toronto Academic Health Science Council. The council is made up of the presidents and CEOs of the eight academic and research hospitals affiliated with the University of Toronto, as well as the vice provost, relations with health care institutions, of the University of Toronto, who is also dean. The members of the council are listed in the submission before you.

The vice-presidents of research and the university vice provost meet as a subcommittee of TAHSC to consider research issues of common interest. Scientists on the university campus and at the eight teaching hospitals represent the full range of research supported by the Canadian Institutes of Health Research, from basic medical science and genome research to population health and health systems research. Each year they successfully compete for hundreds of research grants worth millions of dollars. Indeed, 23% of the national research funding provided by CIHR in the last competition went to investigators based at the Toronto academic health science complex.

As defined by Bill 159, virtually all research undertaken in the teaching hospitals requires personal health information and is therefore covered by legislation. We are here today to speak about issues of Bill 159 as they relate to the research programs at our hospitals. There are four specific points we would like to address:

(1) We support Bill 159 insofar as it provides protection for the privacy of individuals and the confidentiality of personal health information, and establishes a framework for the governance and uses of personal health information in research.

(2) Research ethics review bodies may allow hospitals to disclose personal health information to researchers. We support the power of research ethics review bodies, the conditions for approval and requiring consent, and the agreement between the researcher and custodian specifying the conditions or restrictions on the use of personal health information. Of necessity, the research ethics boards will have to tighten procedures for the approval of projects and the uses of databases in research.

(3) We are opposed to disclosure directed by a minister, as stated in section 31. This section implies a direct threat to independent scientific inquiry and the academic freedom of health scientists. We ask that this section be modified to explicitly exclude health research approved by research ethics review bodies.

(4) The legislation stipulates that research ethics review bodies be designated by regulation. Given the importance of their work for health-related research and the number of research studies that must be reviewed each year, we trust that the procedures will be in place for timely designation by regulation. We look forward to discussions with the Ministry of Health and Long-Term Care about the criteria for designation and the terms of reference for research ethics review bodies as the regulations are being considered.

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Bill 159 issues a wake-up call for research ethics boards of teaching hospitals. The University of Toronto and the members of TAHSC acknowledge inconsistencies in policies and procedures of research ethics boards. TAHSC will harmonize research policies of the university and its partners, including the policies and procedures governing the ethical conduct of research. In particular, a common schedule of policies and procedures has passed through governance at most of the hospitals, and every university-affiliated institution will have subscribed to this policy by the end of March. Further, TAHSC is striking a number of university hospital working committees to achieve further enhancements and harmonization of policies.

The university and hospitals have agreed to implement policies and procedures that are consistent with the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans. The Canadian Institutes of Health Research is tracking the changes in federal and provincial legislation related to the privacy of individuals and the confidentiality of health information. The Tri-Council Policy Statement will be reviewed and modified to meet the requirements of the new legislation. The university and hospital will update their policies and procedures accordingly.

Thank you for your attention. Please call upon us if we can assist you in any way with the bill as it progresses through the legislative process.

The Chair: Thank you very much. You've left us lots of time for questioning. This time we'll start with the NDP. We'll have about four minutes for each caucus.

Ms Lankin: You said in your presentation, "Of necessity the research ethics boards will have to tighten procedures," and you've spoken about the kind of review that's going on within the family of U of T and some of the inconsistencies that have already been found. Could you elaborate on that for us? Why would the ethical bodies now not have procedures that you would think would be tight enough? How has this culture evolved?

Dr Williams: There are two principal areas where tightening is required, and my colleagues may wish to add more. The first is having clear and explicit understandings, agreements with the researchers as to the collection of the data and how it will be used. It is a problem right now with the availability of laptops and with health sciences students and graduate students working in teaching hospitals in collaboration with investigators. I wouldn't want to say that the research was unethical, but sometimes research does take place without the research ethics boards necessarily knowing of it. So tightening up the relationship between researchers, the trainees and the research ethics board I think is required.

Secondly, again because of the availability of technology, we are developing databases to help us understand better how services are being provided, the efficacy of treatment and the cost and effectiveness in the longer run. The databases can be used for research, but again I think this is another area where research ethics boards may not be entirely on top of the situation in terms of usage of health information for research.

The third area which I will add is the whole area of waiving informed consent for studies or the allowance of proxies for informed consent. They are highly contentious issues that research ethics boards continually struggle with. I think this is one area where harmonization is going to help us greatly.

Ms Lankin: Harmonization is one thing, but the actual minimum standard that's going to be set with respect to that third issue in particular is important in the context of what this bill purports to achieve in protection of privacy.

The federal Privacy Commissioner has told this committee to scrap the bill. He has said that essentially there is no room for disclosure of information without informed consent, for research or any other purpose. Could you give us some practical examples of the kind of research that requires identifiable information and no informed consent participation on the part of the patient?

Dr Williams: Yes. I might start by saying that I was flabbergasted by Radwanski's presentation to this committee. It is almost as if the legislation framed by Manley and the Minister of Health, Allan Rock, live in two different worlds. Allan Rock is very much concerned about the development of population health information systems, building information systems that can be used for accountability, information systems that can be used to ensure access of services, efficiency and effectiveness of care. Indeed, the special funding released through health transition funds by Allan Rock has allowed Statistics Canada and CHR to produce the health reports that we see published in Macleans. Quite frankly, to do the population-based research that Allan Rock is advocating and that is being picked up by Statistics Canada, Health Canada, CIHR and researchers in this province would not be possible if informed consent were required.

Ms Lankin: Can you give us some practical-

The Chair: Ms Lankin, we've gone well over the four minutes. Mr Wood.

Ms Lankin: All I want to ask him is, why do you need the names?

Mr Wood: Perhaps I could pursue that issue. You would agree with me that in order to do valid research what you need is a representative sample of the whole. You don't have to survey the whole. You have to survey a representative sample of the whole. You would agree with that, would you not?

Dr Williams: I think that is true for a number of studies, I won't dispute that point, but if we're talking about population-based research as a type of research that is essential for understanding how our health care system works, a representative sample does not work.

Mr Wood: Why is that the case? This is done all the time by pollsters. Why is that not the case? Why do you say that? Why does a representative sample not give us a proper picture of the whole?

Dr Williams: The biggest problem is that if you want to chase specific events-let us say, for example, outcomes of cardiovascular care-the question would be, how would you start with a representative sample? As events get rarer, your sample size requirements grow. If you start with a random sample of the population you'd have to have a huge random sample. If you start from the persons with the events, you're getting a biased sample to begin with. If you want to study across a number of specific health problems and their conventions, you end up getting repeated random samples. At some point it becomes more efficient and effective to study the population as a whole.

Mr Wood: What I'm not grasping here is, why would you not ask for consent of a representative sample first?

Dr Williams: I think the ideal would be for people to know when they are seeking health care how the health information might be used. The study and the uses of health services would be among those things included.

Mr Wood: But suppose they don't give their consent for that? Suppose they want treatment and don't want that done? Would you deny them the health care?

Dr Williams: Then I guess we get down to the classic problem of the rights of the individual versus the public interest.

Mr Wood: That's a good frame of the question. Perhaps I can go on to one more point, because I'm about to run out of time here.

The other point I want to ask about is this: when you have these ethics bodies doing reviews, do you have a problem with someone like the Information and Privacy Commissioner signing off on those decisions before they're implemented?

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Dr Williams: This is a very important question. In the discussion paper the minister released in September of this past year, there was a specification of an overview body within the ministry that would review the activities of research ethics boards. We found that a bit disconcerting because there was very little by way of terms of reference for this body or any discussion as to how standards criteria, policies and procedures would evolve. That has been removed. Some of the functions of overview have been installed with the privacy commissioner of Ontario, which is fine, but we're still left with, in the final analysis, how are research ethics boards going to govern their business with respect to policies and procedures? That's not clear. It's not clear whether it will be covered under the regulations as they are developed.

Mr Wood: Would you have-

The Chair: Sorry, Mr Wood. We've gone over.

Mrs Sandra Pupatello (Windsor West): Using the example that Cancer Care Ontario spoke of earlier today in terms of identifying the names of people involved in research, you could, for example, need to know who the people are, to know where they work, so that you could see that the disease was environmentally based or workplace-based etc. I think I understand why in some research you need to identify who the people actually are. So in terms of whether you use a representative sample or not, sometimes you need to know who they are, and the incidence of some disease you're researching is such that it's so minimal that you need to know a lot of specifics that would identify individuals. Tell me why it is that you're not doing this now-my understanding is that you have a whole opportunity now to do the research that you want-and why this bill would suddenly change that.

Dr Williams: I don't have a satisfactory answer for your question. Certainly, there are practices and procedures that have evolved in the research community over time. The good thing about Bill C-6 and Bill 159 is that it does call for us to review what we're doing and to think through our policies and procedures. I suppose the reasons for why things might happen would vary from hospital to hospital and research ethics board to research ethics board. I can't answer your question. All I can say is we have to change.

Mrs Pupatello: I guess my question is, to put it a different way, are you limited somehow now or is Bill 159 going to limit you in the future, considering your current work? Are you somehow limited and Bill 159 takes those restrictions off, or given 159, you will have restrictions that you can't operate under?

Ms Gail Czukar: Let me take a stab at answering that one. Some of the kinds of things that could not be done under Bill 159, one of the things that concerns people in the mental health and addictions community in particular, is that now a lot of research is done with consent. Say it's a situation where you're not looking at past records but you're collecting information from people on a going-forward basis. They sign consents which say, "You can use this information for the purpose of this research. This is how I understand it's going to be and it's not going to be used for anything else." Under Bill 159, that kind of assurance would not be possible in that form because we have directed disclosures to the ministry, which Dr Williams has addressed directly in his brief. There are other discretionary disclosures that, although they are not mandatory-as we'll be saying more in our presentation later in the week-we believe will exert pressure on the keepers of that information to disclose as time goes on. That's one of the problems we have.

Mrs Pupatello: A very quick one: what would be left for you if this bill does not get passed? For you to operate under C-6, I guess if you could shortly answer, how is that going to affect you? Will that stymie you in your operations and in what way?

Ms Czukar: My understanding is that under Bill C-6 we would require consent for research. I don't understand how researchers could link databases. Dr Williams will also be appearing this afternoon with another group and they may speak to this more directly, but in order to link historical data-that kind of data has been collected and those records are held by health providers who have used very different identification systems. Some have used health numbers, some have used names, some have used their own unique identification system. It would not be possible, most significantly, to compare different kinds of treatment in the health system. If you wanted to compare, for example, drug treatment with community mental health alternatives, you would not be able to do that in most cases because community mental health programs keep their information very differently from the way hospitals do.

So if you're going to do that on a historical basis, you have to have identifiers up front. My understanding is that the institutes that do this kind of research link it and then destroy the linkages and the identifiers so that you have anonymized information or databases that can be very useful. But you can't compare different kinds of treatment in the system without having access to that information.

The Chair: Thank you very much. We appreciate you coming before the committee here this morning.

INSTITUTE FOR WORK AND HEALTH

The Chair: Our next presentation will be from the Institute for Work and Health. Good morning and welcome to the committee. Again, we have 20 minutes for your presentation.

Ms Jane Bartram: We have some handouts for the committee, both slides and a copy of our presentation. Good morning, Mr Chairman and members. My name is Jane Bartram. I'm the interim president at the Institute for Work and Health. With me I have Sheilah Hogg-Johnson, who is a senior scientist with us, and Jennifer Payne, who is a scientist. They may be able to help you on some of the more technical aspects of your questions.

We want to thank you for the opportunity to speak to you today about Bill 159. Our comments on Bill 159 are restricted predominantly to the research area. What we'd like to do this morning is provide you with a bit of an overview about our point of view about the legislation, provide you with support for the legislation, talk to you a little bit about who we are so you understand the nature of the research we do, some of the principles that guide that research, our own practices-and we'll be able to take you through a case study that may respond to some of the questions I heard earlier-and then bring you to the conclusion.

We want to confirm, first of all, about the importance of the right of privacy of individual health information and the balance that you've talked about here at this committee already between that individual right and the public good that can come from research. I want to share with you the commitment of our researchers to finding that right balance.

The Institute for Work and Health is a research-based organization that looks at new ways to prevent workplace disability, improve treatment and look at optimal recovery and safe return to work. We're an independently incorporated, not-for-profit, non-statutory organization established in 1990, originally as part of the WCB's medical rehab strategy. We continue to hold the major contract with that organization, where we receive about 80% of our funding for research, with 20% of it coming from other funding sources.

We have a multipartite board of directors with management, labour, health care, the WSIB and academic leaders. We have an international research advisory committee chaired by Dr Len Syme from the school of public health at the University of California at Berkeley. We look to using research which involves individuals with consent, but we also have access to administrative databases, which I'll talk to you about in a little bit more detail later.

We think this legislation is needed and we welcome the legislation. I think it recognizes some of the important contributions that research makes to the health of individuals and to our society. Researchers share the public's concern about privacy for personal health information, and even though I know there are also concerns, the research community actually has been able to articulate a number of very important principles for protecting individual privacy and has often been an advocate for this. We need to strike that balance between individual privacy and public good.

In the previous presentation you heard about the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans. This is a standard document for many mature research organizations in the country. The document was put together by the Medical Research Council, the National Sciences and Epidemiological Research Council and Social Sciences and Humanities Research Council in 1998, and is the basis of many research ethics boards in our universities across the country.

The diagram that you'll see underneath the picture of the front of the ethical conduct for research involving humans pulls together the kinds of principles that they feel are important for research. Beginning at the top of that diagram, you see "autonomy," autonomy for the individual being most important in terms of the research ethic. In consideration with that are "privacy" and "confidentiality," in other words, how you access, control and disseminate personal information in relation to research, informed consent certainly being the gold standard for protection; and also consideration and protection of vulnerable individuals; then the balance between the value of the research and the justice that it can achieve. Looking at justice, they look at both the fairness and equity of the research, procedural justice as well as distributive justice, the benefits of that research.

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On the value of the research side, we take a look at beneficence, which is the duty to benefit others and to maximize that duty and that benefit, and also non-maleficence, which is the duty to avoid, prevent or minimize harm. Researchers take these ethics to work when they decide how to do their research, how to engage individuals, and the research ethics board looks at those principles when the research proposals come forward.

We wanted to share with you some of the standards that are in place at our practices at the Institute for Work and Health to try to find that balance. First of all, there's an oath of confidentiality that all the researchers and staff must sign. We've included a copy of that for your information. We take our research to the research ethics board. The tri-council policies are the basis for defining the research. We need to always make sure that we have identified how we'll be collecting that information. The ethics boards then help us make the decision about whether individual consent is necessary or not.

We have access to administrative databases from the WSIB, and I will take you through a case study, for example, where we needed to link it to OHIP data and the kinds of safeguards that we put in place to do that. Identifying information is always stored separately from study information data. It's off-line, it's under lock and key, with very few individuals who have access to it. All our computing facilities are password-protected. We have a second computing environment which is secure and which is not linked to the Internet.

We have research agreements that we put in place through a review by the research ethics board. These will help us if we need to access other databases. For example, we take our research agreements if we need to have access to some limited OHIP data, and we sign an agreement which, in the future, would be a research organization or an information custodian.

We proceed with consent if the consent is the way in which we want to go or is the way in which we're connecting with individuals for the research. If we're looking at administrative or secondary sources where there's no intervention, there are no risks of physical or psychological harm, confidentiality can be maintained by making the data anonymized and the research will benefit society, then we are less likely to proceed with consent. So we're looking for that balance.

I'd like to take you now through a case study. I think it's important to understand that the research mandate often, in a publicly funded health care system, is to make sure that the system is working with equity, efficiency and effectiveness in the delivery of care. We had a research study which looked at injured workers with musculoskeletal injuries. We had comparisons of costs. We wanted to look at the comparisons of cost and effectiveness of treatment provided by different clinical professions. We needed to inform policies in the future surrounding clinical practice and funding of health care services.

We had linked interview information. We had five interviews from 1,500 workers. We had access to Workplace Safety and Insurance Board rehab service data, and we wanted to take a look at having a better understanding of the overall health care utilization by this group. The research protocol was written. It went to the research ethics board at the University of Toronto, where the principal investigator has an appointment. It was approved as not requiring individual consent, but we also, in order to do the data matching, had to make sure that the data was anonymized and was safeguarded.

We made the request to the Ministry of Health, accompanied by the research ethics board's approval. We had a signed research agreement with the Ministry of Health to have access to the data, and the data were made anonymous.

The diagram I've provided for you on the case study shows the number of steps that we went through to link the data, to keep it anonymized. The data was kept separately on a disk, again, never available through the Internet or electronically. It was kept in a secure place and only very few staff had access to it. At the end of the study, all this data will be destroyed.

We acknowledge the issue raised by the federal Privacy Commissioner that even so-called annonymized data may be identifiable-characteristics of certain people if they're rare enough. As a research organization, our practice is never to display sparse data on small data sets but rather to always group them or aggregate them in the result to decrease the likelihood of identification.

Having provided you with an overview of some of the principles and an example of a case study where we had to do the linking and protect the data, we want to conclude with some strong endorsements of this legislation. We think it clearly puts in place some best practices that all research organizations should be using. There continues to always be the need for balance between the individual right to privacy and the anticipated benefits to society. It's a difficult line to walk sometimes and I think the research ethics boards are a critical component to make sure that line is walked carefully, that the mechanisms for governance of the data are in place within the organizations and that best practices will continue to evolve over time.

With that, I think I will close our verbal presentation and open it for questions.

The Chair: That leaves us about bang-on three minutes per caucus and this time we'll start with the government.

Mr Spina: Please help me understand this better if I haven't got the understanding. I gather that most of the research you're engaged in has to do with physical elements of the research of workplace health and safety, is that correct?

Ms Bartram: Yes. Our research is in three areas. We have the clinical area-and I just described case studies in the clinical area-we have research that looks at the workplace itself and how to prevent injury, and then we have a third area of research that's looking at population health research. So it's looking at the full working population and what kinds of issues emerge in relationship to the nature of injury over time and compensation systems, for example.

Mr Spina: It's my understanding that WSIB, in more recent years, is also looking at compensation for psychological or stress-related injuries. In view of the presentations that were made earlier by the Ontario Coalition of Psychiatrists, for example, with regard to psychological counselling and those kinds of care issues, do you have an opinion or a position with respect to that and the amount of disclosure that could come out of that?

Ms Bartram: I'm sorry, I did not hear the earlier discussion, so it's difficult. I can't make comments on that. I also should not make comments on WSIB policy. My understanding is that WSIB is fairly silent right now as it relates to stress and compensation. They look at it more on a case-by-case basis.

Mr Wood: Do we have any time left?

The Chair: Probably not enough to get a good question and answer.

Mr Wood: Carry on.

Mrs McLeod: If Ontario does not pass its own health privacy legislation, are you in any way affected by the federal legislation, in your understanding?

Ms Bartram: We haven't looked at the federal legislation in quite the same detail as we have this bill. My understanding is that the federal legislation affects the commercial side, and being a not-for-profit, non-statutory organization-

Mrs McLeod: You are probably exempt from that.

Ms Bartram: -I'm not sure how it will apply to us. We haven't had our lawyer look at it.

Mrs McLeod: If we pass legislation in Ontario and it contains some modified form of lockbox, for example, where somebody could request that certain parts of their health information not be disclosed, does that significantly interfere with the kind of research you need to be able to do?

Ms Bartram: I'm going to turn it over to our senior scientist, who is a methodologist.

Dr Sheilah Hogg-Johnson: It may, depending upon how widely it's used. One of the things we're concerned about in science is the introduction of systematic bias. If we're studying a certain condition and all of the important cases we wish to study have placed a lockbox on that information, we won't find it, so we won't be able to study it. But that's the only scenario under which-

Ms Jennifer Payne: The conclusions you would draw as a result of that are biased, because you don't realize that you've missed the most severe group, for example. They're no longer representative of the entire entity you wish to study.

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Mrs Pupatello: You mentioned that you would like to be considered a custodian. I think your outstanding question summarizes what would happen with the bill if you aren't, in terms of being able to access data that may not be billings through OHIP, for example, and some of the studies that seem to be relevant in workplace studies. Because the Minister of Health is considered a custodian and, in the example of the case study you used, you accessed permission from the minister anyway to do the research, why is that necessary? You managed to do what you needed to do in the absence of Bill 159 by receiving consent from the minister.

Ms Payne: That's a case of best practices as put forward by our group. That project was sent to a medical research council for consideration for funding. We're required to go through an REB review as part of that application, again, in keeping with the tri-council guidelines. As part of that, we have to apply for access to the data via the ministry. We wanted to use that as a case study to show how we would like to see the legislation put in place, to ensure that all researchers are doing things in that manner. That's what we consider best practices for research.

Part of the research agreement and the ethics review board involve a consideration of consent and how the data will be treated. The flow chart tries to show you how certain identifying information is kept separate from the rest of the data. For example, even though we got access to OHIP data, I never wanted to see the OHIP numbers. It wasn't appropriate. It's not required for my work. We had other people do the linkage for us to ensure that we never saw confidential data. In the end, we have an anonymous file, which we treat with the same confidentiality and privacy issues that we treat any data file. The point was to illustrate how the legislation looks exactly like what we do, but what we do isn't necessarily what's done regularly throughout the research community. That's why we endorse the legislation.

Ms Lankin: On that point, what is it in the legislation you would say ensures us of a higher quality of privacy protection in the research community? It simply says that it must be subjected to ethics board review. That's a question of policy. It's a question of how policy gets implemented. I didn't get a chance to ask that earlier of the research councils when they were here but I know that, from hospital to hospital, existing policies that look very good on the books are implemented very differently. I don't see a legislative requirement here. Is that appropriate or do you think there's some protection in the act that I'm missing?

Ms Payne: I guess the naming of the REBs is left to the legislation, so how they're named and the standards they must follow I guess are left to the legislation.

Ms Lankin: To the regulations, you mean?

Ms Payne: Sorry, the regulations. As a matter of practice, the researchers in our group have to go through the research ethics boards at the universities where their investigators are affiliated. We don't deal with hospital ethics review boards; we deal with the universities. We're comfortable with the level of review. But I agree that the standards could be very different.

Ms Lankin: Let me ask you a question about your case study. I may be getting closer to that elusive answer I'm looking for. I don't understand why you needed identifier information in this circumstance. You started off in that case study with individual interviews. Why couldn't you have asked for consent, then, to go on to look at the rehabilitation files and then to go on and look at the OHIP files?

Dr Hogg-Johnson: This was a secondary analysis of data that was collected for another purpose. The data were there. They were also good to answer this second question. We could have tried to go back and get consent. I think there were good chances that we wouldn't find everybody. If we didn't find everybody, then we don't have a representative sample of the original group.

Ms Lankin: Tell me what the secondary purpose was and why it was so important that it would override the principle of informed consent.

Ms Payne: The second purpose was to bring in the OHIP billing side of things. The workers' compensation insurance system uses OHIP as a third party payer. When the initial study was first designed, it wasn't envisioned that we would go to the physicians' services data, which is contained within the OHIP billing database. The ethics body was very concerned about the lack of informed consent to link with OHIP. They ruled that we didn't require informed consent because somebody who is being treated under a workers' compensation scenario is getting their care from the same provider, regardless of whether that provider bills to workers' compensation or OHIP. So it wasn't necessarily seen as harm to the individual because the administrative division between workers' compensation and OHIP isn't seen by the individual.

Ms Lankin: But you didn't get consent in the first place.

Ms Payne: There was consent to take part in the study, certainly.

Ms Lankin: So it was only the last step of then going to OHIP to look at the other-

Ms Payne: And that's why we had to go to ethics.

Dr Hogg-Johnson: It cost hundreds of thousands of dollars to collect the information. To go back to square one for the second question would again entail hundreds of thousands of dollars. If you can answer the question-

Ms Lankin: I could say, facetiously, "Bad design; not my problem," as an individual patient who deserves to have my information-I'm actually supportive of the need for research but I'm trying to understand it in real, practical ways so that we get all the protections in the legislation that are necessary. I don't feel like I'm getting hard enough information from researchers about the need for this.

The Chair: That exhausts our time. Thank you very much for taking the time to come before us this morning.

REGIONAL MUNICIPALITY OF YORK

The Chair: Our next presentation is from the regional municipality of York. Good morning and welcome to the committee.

Dr Helena Jaczek: Good morning. I'm Dr Helena Jaczek. I'm commissioner of health services and medical officer of health for the regional municipality of York. With me are Manuela Di Re, who is from the corporate and legal services department of the region, and Diane Bladek-Willett, who is our director of policy and planning in the health department.

We have a high-tech PowerPoint presentation, which is probably entirely redundant. Hopefully you have in front of you our presentation in paper format.

We're here in front of you because the regional municipality of York is a major health care provider to the residents of York region. Courtesy of local services realignment, we operate land ambulance directly and have done so since January 1, 2000-and enthusiastically, I might say. We also operate two nursing homes through the Homes for the Aged and Rest Homes Act. As medical officer of health, I am required to ensure the provision of mandatory health programs and services guidelines pursuant to the Health Protection and Promotion Act. We have many other community health programs, not only within the health department but also the community services and housing department.

Therefore, we are concerned about some very practical issues related to Bill 159. As I have described, being the provider of so many different services, one of those is the issue of multiple custodians. We will get to that shortly.

Generally we are in support of Bill 159. In particular, when we received the overview from the government, we felt that the protection of privacy provisions was going to be there. However, as my legal colleagues always warn me, the devil is in the details, and on receipt of the bill itself and looking at it a little more closely, we do have some concerns. However, with the recognition that there is a need for privacy legislation for those groups who are currently governed by codes of conduct and ethics of their profession and so on, I believe as a physician this legislation overall is helpful, and I would say that the recognition that information managers and those in the support area of information technology should also be bound to privacy provisions is an extremely important concern.

However, as it relates to the regional municipality of York, we are currently guided by the Municipal Freedom of Information and Protection of Privacy Act, and we have some nearly 10 years' experience with that act. We believe that we have protected privacy appropriately as it relates to personal health information that is in the possession of the region of York through the very large number of requests we have received over time through the MFIPPA legislation. We believe that Bill 159 will produce an administrative duplication, and we are concerned that perhaps this is an oversight, as we know that the current government in Ontario is particularly averse to any signs of duplication in terms of inefficiency, because we would therefore see, though it is not entirely clear but we believe it to be so, that we would be subject to certain requests for information to be governed by the MFIPPA legislation. If it related to personal health information, then Bill 159 would take over. We feel this will result in some confusion both on the party making the request and perhaps within the region and our own employees as well.

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As an example of how we have used MFIPPA to protect privacy and yet also allow for freedom of information, some of you may be familiar with a situation in King City where we have had numerous requests for individual lot-by-lot information regarding malfunctioning of septic tanks. We protected individual homeowners' privacy. We did not release that information. However, we aggregated the data in terms of addressing the public good, which was, in fact, "There is a major problem in King City given the number of failing septic tanks." All that information has been used in aggregate form, I believe to a certain degree of satisfaction of all those concerned.

We have also had numerous contacts with parents concerned about sexual health clinics that we operate within the region and attendance of their children at such clinics. We make it very clear that it is our position that children should always discuss such relevant matters with their parents but that their privacy is protected. When they give us that information and come to our clinics, they sign at the bottom of their history form that they understand and that we understand that this information is collected with a view to protecting their privacy.

Our fundamental recommendation, as it pertains to regional municipalities that provide health care, is that we should be exempt. Knowing that this might be a somewhat simplistic solution, we will provide you with some other alternatives.

Our second recommendation relates to the number of custodians. We have counted at least six separate custodians at the region of York, and apparently I will be a custodian in two separate parts of the act where I would be given different provisions when and where I could provide health information. Believe me, I have enough trouble knowing where I am and being one person let alone wearing two hats or more.

We have looked at the act and we have a specific suggestion regarding the operation of section 3, so we have a specific modification suggested. By being exempt from the operation of section 3, the effect is that the regional corporation would be designated a single custodian, which at the very least means that we would no doubt have one for MFIPPA and we would have one for Bill 159.

I am now going to hand over to my legal colleague for more specifics.

Ms Manuela Di Re: Good morning. My recommendation is recommendation number 3: that Bill 159 provide one consistent standard for disclosure of information in a legal proceeding.

As it currently reads, Bill 159 has two such standards. The standards imposed in subsection 34(4) apply to persons listed in paragraphs 1 to 4 of the definition of "health information custodian," and subsection 34(1) applies to all the other custodians. Practically speaking, for the region this means that one of our custodians, namely, the medical officer of health, would be a custodian and subject to the standards imposed in subsection 34(1), whereas the remaining at least five custodians at the region would be subject to subsection 34(4).

Practically speaking, what are the differences between these two standards? Very simplistically, while the medical officer of health can disclose personal health information for the purpose of a summons, subpoena or court order, the remaining five custodians at the region are not able to disclose pursuant to a subpoena, summons or order. They have to wait for an order after a judge holds a hearing within a bigger hearing and makes a determination that the disclosure is relevant and important in the interests of justice.

Why is this such a complication for the region? Taken in the bigger context here, not only do our employees, at first instance when they get a request for information, have to determine what act applies, the Municipal Freedom of Information and Protection of Privacy Act or Bill 159, they then have to ask the second question: "Which of the six custodians at the region is the request being made to?" Once you determine which of the at least six custodians we have, then the next question is, "OK, which standard applies to this custodian in a legal proceeding?"

Therefore, we request a modification that has one standard for disclosure in a legal proceeding, either subsection 34(1), which I believe is the most appropriate standard, or subsection 34(4).

Personal health information is very important and its confidentiality should be protected. Therefore, there should be the same standards that apply regardless of the custodian involved in the situation.

Our fourth recommendation is that a definition should be provided for the term "community health program or service." This first comes into play in the definition of a health information custodian. It basically states that any person who operates a community health program or service is a health information custodian. No definition is provided for that term. It is our submission that not only should a definition be provided, but that the definition exclude mandatory public health programs or services. Mandatory public health programs or services are those required to be operated by the medical officer of health and the public health department pursuant to the Health Protection and Promotion Act.

The reason why, practically speaking, is first of all, the medical officer of health is deemed a separate health information custodian from those who operate community health programs or services. Therefore, if mandatory health programs and services are encompassed in the definition of community health program or service, what would happen is the medical officer of health would be deemed one custodian, whereas the people who actually implement and operate the program on behalf of the medical officer of health would be deemed a separate health information custodian.

When you take that even further, based on that whole discussion I had earlier about section 34, about disclosure in a legal proceeding, it would mean that the medical officer of health would be required to disclose under subsection 34(1) and her employees would have to disclose under subsection 34(4). The medical officer of health can disclose pursuant to summons, subpoena or order and her employees who operate and administer mandatory public health programs on her behalf would not be so entitled. They'd have to wait for a judge to issue an order after he made a determination in the hearing as to whether this disclosure would be valid in the interests or justice.

I'll turn it back to Dr Jaczek for recommendations 5 and 6.

Dr Jaczek: As you will notice in recommendation 5, we feel that clause 34(4)(d) is in fact far too broad. This is where we are concerned about a lack of protection of privacy.

The provision that is currently in Bill 159 allows for disclosure of personal health information in a legal proceeding where the conduct or actions of a person to whom the personal health information relates are at issue. This does worry us considerably. One can postulate a number of situations, but as an example and to follow up on the sexual health clinic example, perhaps a parent might perceive that a child is threatening in some way, might report that, might demand that the personal health information related to that child be fully disclosed. We would have great difficulty with that. We would see that as a situation where attendance, as an example, at a sexual health clinic or at any other clinic would not be relevant necessarily to the situation. We feel there is a potential there for unnecessary, irrelevant disclosure of information.

That's the way we seem to read this particular section and perhaps just some clarification is required. But the way the wording reads now, we feel there is a potential invasion of privacy that could occur.

In terms of our final recommendation, I guess in a sense it does relate somewhat to the previous example where we feel the legislation may be too broad. As an example, we have operated for many years in accordance with the Child and Family Services Act pursuant to cases where a child's safety is potentially an issue. There it is required that there be a court order before we release any information. This is where this is initiated by the children's aid society. Obviously, we have been in many cases on the side of disclosing to the children's aid society that we have concerns. But in this particular case, a court order is issued; our staff are required to release information. We are not aware of any instances where this has proved problematic.

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We feel that this type of protection of privacy, and yet the need for health information in an important situation, is there. This has operated well, and in fact we would require some clarification as to whether Bill 159 will now supersede those provisions of the Child and Family Services Act. It's not entirely clear from our reading.

Having made our six recommendations, we would just like to reiterate that clearly this is an extremely important matter. We feel, as a regional municipality and subject to MFIPPA since I believe 1991, that in fact we have been protecting the privacy of personal health information kept in our corporation, and a fundamental request is that we should be exempt. If not, we have pointed out to you a number of areas where we feel there needs to be clarification, a reworking perhaps of some of the intentions that are there, and that we believe and are confident you also understand. With that, we'd be happy to entertain any questions you might have.

The Chair: Thank you. We have two minutes so I'll give all the time to the next party up in rotation. That would be the official opposition.

Mrs McLeod: I'm getting increasingly concerned at the number of presenters who say, "Great legislation, we support it, as long as you exclude us," and that seems to be the tenet of your presentation today as well. That leads me to two particular questions I'd like to ask you that are related. The first is, in what way do you feel that in the absence of legislation you are either prohibited or limited in accessing information that you need to do your work, or secondly, that you feel unable to protect personal health information?

Dr Jaczek: I have no worries in terms of protecting personal health information currently within the framework we're using, which is MFIPPA. I have no hesitation there. I would say that having heard some of the researchers from the institute of health in the workplace-I'm sorry, I'm not familiar with the exact title-there clearly are major issues. We have come across this in terms of identifiers, different organizations using different identifiers, linking-delinking data. Perhaps it does relate somewhat to design of the study. We have certainly run across that kind of problem.

It is one of the duties of the medical officer of health, in fact, to produce a health status report for the residents of the health unit. As an example, we're finding it extremely difficult to get at what I think would be very useful statistics in relation to injury. Sometimes the police have details of an injury and the emergency room does not; the OHIP data, which is obviously a billing system, has a different diagnosis. So we're left at the end of the day not exactly knowing how many children received injuries from falling in playgrounds, to take it to that level. There are all sorts of obviously research-related situations where collection of data and being able to link it, while protecting privacy, is a major issue. Of course, we simply say the data is not available; that's the end result for us as a health unit.

The Chair: Thank you very much for bringing this presentation before us here today. I'm sure if Mrs McLeod has another question she will forward it through research.

ONTARIO LONG TERM CARE ASSOCIATION

The Chair: That takes us to our final presentation of the morning. It will be from the Ontario Long Term Care Association. Good morning and welcome to the committee.

Ms Vida Vaitonis: My name is Vida Vaitonis and I'm executive director of the Ontario Long Term Care Association. With me is Lois Cormack, the director of resident care policy with the association.

The Ontario Long Term Care Association represents 330 long-term-care facilities throughout the province of Ontario. OLTCA's mission is to empower long-term-care facility operators to provide quality and cost-effective health care and accommodation services.

Our comments in response to Bill 159, An Act respecting personal health information and related matters, reflect the nature of this mission statement and the role we play within the broader health care delivery system.

There is no area where privacy and confidentiality of information is of greater concern than that pertaining to personal health information. Let me therefore begin by saying that OLTCA supports the need for legislation to protect the privacy of personal health information and is particularly supportive of the development of specific legislation that recognizes the special requirements of the health sector.

Bill 159 is a comprehensive and complex piece of legislation. Many of the issues included in the bill have been reviewed by OLTCA in response to the discussion paper released by the Ministry of Health and Long-Term Care last October. We are pleased to confirm that many of the concerns expressed by OLTCA in response to that paper have been addressed in the draft bill.

We would also like to acknowledge that there are specific parts of the bill that we strongly support. One in particular is the provision dealing with individuals who are unable to give their own consent. Over half of our resident population suffers some form of dementia. This fact alone adds an additional layer of complexity to our responsibility to ensure that the principle of informed consent is upheld.

As anyone familiar with the health care sector knows, issues around capacity are always difficult. Therefore, OLTCA is pleased that the same protocols that apply under the Substitute Decisions Act of 1992 and the Consent to Treatment Act of 1992 will be applied under Bill 159.

I would now like to take a few minutes to address specific aspects of the bill that are of concern to our members.

As previously noted, OLTCA works on behalf of 330 facilities that provide long-term-care services to approximately 32,000 residents throughout Ontario. Today, the average age of residents in our homes is 82 years. Approximately 53% of them have dementia and/or suffer from Alzheimer's disease, 30% have some form of depression and 20% have a diagnosis of stroke.

The nature of our role and the services we provide to our residents has changed significantly in recent years. Over the past decade the overall acuity of our resident population has increased dramatically. This increase in acuity has resulted in an increase in the level of care provided to our residents. Since 1993, the level of resident care complexity has increased by 12.5%, based on the case-mix measure, which the Ontario Ministry of Health and Long-Term Care uses as an annual measure of acuity.

It is generally accepted that the resources available to long-term-care facilities have not, however, kept pace with these growing acuity levels. This has placed increasing strain on our existing staffing and resource levels. Given current demographic, policy and funding trends, it is not likely that present circumstances will improve. Rather, we anticipate that pressures will continue to grow as the number of heavy-care residents in our facilities increases.

It is within this context that the long-term-care facility sector is concerned about the workload implications that will be required to comply with the proposed legislation. The policies and procedures to be put in place with respect to the collection, use and disclosure of personal health information will place increased responsibilities on directors of care and other senior staff who manage resident and staff information within our facilities.

In particular, subsection 3(1) makes it clear that each individual facility will require a "separate custodian with respect to personal information of which it has custody or control." The responsibilities of the custodian are extensive and will, at least at the outset, require intensive effort to develop policies, procedures and safeguards to ensure compliance with the legislation.

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Beyond the initial introduction of the legislation, OLTCA is concerned about the ongoing burden that will be placed on staff to meet the expectations outlined within the act, including: proper collection, use and disclosure of personal health information; education of employees of their duties under the act; responding to inquiries from the public about the custodian's information practices; and receiving and responding to complaints from the public about alleged contraventions with respect to the act.

Therefore, OLTCA recommends that the Ministry of Health and Long-Term Care confirm its intention to provide adequate resources to enable our facilities to fulfill their responsibilities associated with implementation of Bill 159. In particular, we believe that the ministry should support an initial training program for long-term-care staff, develop clear administrative guidelines to ensure consistent application of the legislation and provide adequate funding to cover costs that will be incurred by facilities to implement this legislation.

Failure to address the issue of upfront costs will impact on resident care. Reviewing personal health information files and making decisions about disclosure or amendments to resident records requires professional judgment and discretion. It is a job that will need to be performed by senior levels of staff. Time spent developing administrative policies, procedures and forms to comply with privacy legislation will translate into less time for staff to manage and provide resident care.

Long-term-care facilities are not unique in this regard. Health facilities, individual health practitioners and health organizations impacted by this legislation will be presented with the same challenge. Therefore, OLTCA recommends that the ministry, working with the privacy commissioner and the assistant commissioner, assume responsibility for developing policy and procedure manuals, including generic templates regarding collection, use and disclosure of information for use in health care facilities and organizations. Standardizing these materials will help reduce the time and costs that would otherwise need to be incurred by individual facilities and organizations. It will also support a consistent level of quality and control across the health care system. In the absence of this consistency, there will be diversity within the health sector and, based on our experience in other areas, greater diversity between individual facilities and regions. This diversity poses a threat to the spirit of the legislation, the integrity of the system, and the public's acceptance and support for the intent of the bill.

OLTCA recommends that further clarification be provided on the implications regarding transfer of information between different physical sites of the same organization. This is an important issue for our members, given that many of them manage several separate facilities. The need for greater clarification on this issue is also critical for the broader health sector, given the increased focus being placed on coordination and integration within the system.

Section 30(4) of the bill indicates that the Minister of Health and Long-Term Care and, by extension, the ministry, would be permitted to receive personal health information for a number of purposes, including management of the health system, "including the delivery of services, the evaluation and monitoring of the system or part of it, the allocation of resources, future planning and the detection, monitoring and prevention of fraud." OLTCA does not believe that these purposes, with the exception of detection, monitoring and prevention of fraud, require the use of personally identifiable health information.

OLTCA recommends that future drafts of the bill be amended to reflect the fact that the use of information for system planning, management, delivery, and evaluation purposes is fundamentally different from purposes relating to fraud. We believe it is inappropriate for personal health information to be made available to government in any form other than when aggregated or otherwise anonymized. In the case of fraud detection, access to personally identifiable health information should be expressly limited in the legislation for purposes related to the Ontario health insurance plan.

OLTCA has reservations about the practicality of the new directions relating to the disclosure of personal health information for research. Bill 159 now states, "A health information custodian may disclose personal health information to a researcher ... only if a research ethics review body designated by regulation has approved the project or program." That's subsection 32(1). We believe that the phrase "designated by regulation" could have significant implications for practical and effective implementation.

Who will be represented on the ethics review body? Will safeguards be put in place to ensure that decisions made will be for the common good and not personal gain? These are some of the key questions that remain unanswered at this time.

Therefore, OLTCA recommends that the ministry give careful consideration to the issue of the practicality of the new directions relating to the disclosure of personal health information for research. This issue has strong implications for all aspects of health sector research, including how it is conducted, who does it and for what purposes. Further consultation with stakeholders is essential to clarify when and how information will be used to support research projects or programs and to ensure that the regulations developed in this regard are effective, practical and consistent with the spirit of the legislation.

This brings me to my final point. OLTCA believes that special attention must be paid to the process put in place to develop the regulations that will enable implementation of Bill 159. The broad level of consultation that has brought us to this point should form the precedent for where we go from here. Continued input from stakeholders is needed to clarify the details that need to be worked out if this legislation is to be consistently and fairly applied across the health care sector. We need to be part of the dialogue that will clarify such issues as: the safeguards that will be required to meet the storage and retention of personal health information expectations; the costs of reproducing health records and other requirements-these will need to be reflective of the increased administrative responsibilities assumed by health information custodians; and the development of guidelines regarding retention and destruction of personal health information records. To facilitate this process, OLTCA urges the ministry to work with a broad coalition of health care providers to make this dialogue happen.

I want to conclude by saying that OLTCA believes that the government has an opportunity, and indeed an obligation, to provide Ontarians with strong privacy rights with respect to health information. At the same time, there is a vital interest to protect the ability to transfer data for legitimate health care purposes and promote better management and greater integration of our health care system.

Bill 159 is an important and necessary piece of legislation that we believe could be improved further by addressing the concerns we have raised.

Thank you for the opportunity to provide you with our comments. We look forward to continued dialogue with the ministry and our partners in the health care sector to ensure that we have a legislative and operational framework that meets the needs of all Ontarians with respect to the privacy of their health information.

The Chair: That leaves us with about a minute and a half per caucus, so I would ask each caucus to keep it to one or two relatively brief questions. We'll start with the NDP.

Ms Lankin: There are a number of areas I'd like to pursue, but let me pick up on the point of the integrated health care system and services and the ability to transfer information for legitimate health care purposes, particularly with the client population that you deal with. That's critically important. I'm thinking of someone who is in their home, who has home care services coming in, who accesses respite care services in one of your long-term-care facilities, who goes in periodically for episodes of acute treatment in an acute care hospital, who has medication handled by a pharmacist someplace. All of that information is so critical if you're not just treating the disease but treating the whole person, which is so much about what we need to do in long-term care. Does this act prevent barriers in any way? Are the restrictions reasonable? I would think in most cases there would be a desire on the part of the patient or, if they're not capable, their family member, to have that information shared in order to ensure the best quality of care. Have you looked at it from that perspective and can you share with us your views of the provisions in the legislation with respect to that?

Ms Lois Cormack: That is the question and that's what we're alluding to in the regulation, that providers need to be very much involved in that consultation, and the devil truly will be in the detail as to how that plays out. It could be extremely onerous to get consent between providers. The intent of this, particularly as we move to more electronic exchange of information, should be that that burden be removed so that information can be shared, that the client or individual is OK with that and that's established upfront. Hopefully that will be worked out in the regulation.

Mr Wood: You've made some comments with respect to the ethics committees that are proposed for research. What would your reaction be to having the Information and Privacy Commissioner sign off on each authorization for disclosure?

Ms Cormack: I think that's what we were alluding to in terms of that designated by regulation. Our concern is, is that just adding another barrier to research and is there a way of working with the current ethics bodies, the current processes, for research?

Mr Wood: Someone, though, has to ultimately sign off. What would you think about making that the Information and Privacy Commissioner? Right now I think it's contemplated that this committee would sign off. What do you think about the Information and Privacy Commissioner as the person signing off?

Ms Cormack: We probably wouldn't have an issue with that other than in terms of timeliness and the bureaucracy that sets up-and is that necessary-as long as it can be timely and so on.

Mrs McLeod: I share some of the concerns you've expressed in one section of the bill about the broad access of government to health information, but your recommendation seems to go very strongly in the opposite direction. You say, "We believe it's inappropriate for personal health information to be made available to government in any form other than when aggregated or otherwise anonymized." Would that not put some fairly serious limitations on the ability of the Ministry of Health and Long-Term Care to carry out its investigatory role in relationship to long-term-care facilities?

Ms Vaitonis: Under its normal mandate it has that particular duty and obligation, so we're not looking at it interfering with that. We would not be opposing that piece of work that they currently have responsibility and obligation to perform.

The Chair: Thank you for coming before us here this morning. We appreciate your presentation.

With that, we stand recessed until 1 o'clock.

The committee recessed from 1202 to 1300.

THE MURRAY GROUP

The Chair: I'll call the committee back to order. We continue our hearings on Bill 159, An Act respecting personal health information and related matters.

We're joined, as our first group, by the Murray Group. Good afternoon. I wonder if you might introduce yourselves for the purpose of Hansard, please.

Mr Ian Murray: Mr Chair, ladies and gentlemen, I'm Ian Murray from Amherst Island.

Mr Stanley Burke: Stanley Burke, a neighbour from Amherst Island.

Mr Murray: My lawyer, David Baker, Peter Trueman, my son Jacob, and Peggy Coulter.

It was about three weeks ago that Ann Cavoukian, the Information and Privacy Commissioner of Ontario, spoke to this committee. I am here to support one of her requests, that the right of a citizen to appeal to the commissioner should be put into the legislation when a citizen wants to have a health claim record corrected, not to leave it solely up to Ministry of Health to do so. That's outlined in my brief.

Rather than going through the brief point by point, perhaps I can put a bit of a human face on the problem as it has affected my life. About two years ago, I was phoned by an OPP sergeant asking me if I was aware that there had been $6,000 to $7,000 worth of claims on my OHIP record by Dr Alex Scott, who was a neighbour and reasonable friend. I said, "No, I don't think that's true." Dr Scott pled guilty to almost $600,000 of false billing to OHIP.

The Chair: Mr Murray, I wonder if I might interrupt just for second, please. It's something we do as a matter of form whenever individuals come before us. I won't take this away from your time, but we have to caution witnesses in committee and just go through the formality of it.

While the members of the three political parties enjoy parliamentary privileges and certain protections pursuant to the Legislative Assembly Act, it is unclear whether or not those privileges and protections extend to witnesses who appear before committees. For example, it may very well be that the testimony you have given or are about to give could be used against you in a legal proceeding, so I caution you to take this into consideration when making your comments.

I'm saying that only to make sure it's on the record, given that you do mention names in your presentation.

Mr Murray: Reading me my rights. OK, thank you.

I was then alerted that I had some false claims on my record. About a year ago I decided I'd find out what was on my file and in April, I received a decoded claims record from OHIP. I was somewhat disturbed to find that there were two billings for "malignant neoplasms-brain," which meant brain tumour, 29 psychotherapy sessions for alcoholism and five psychotherapy sessions to treat my hysteria, neurasthenia, nervous exhaustion and something else that I forgot about. I didn't want those on my record and I thought it would just be a matter of requesting that they be removed. So I wrote a letter and said, "Please remove these," explaining the situation, that the doctor had been charged with fraud etc.

A month later I received a letter back from OHIP saying that I would be contacted in the near future. That was May. In August, I received another letter from OHIP saying that they were unable to action my request due to technical constraints. However, they were willing to put on a disclaimer. I was allowed to say I disputed the record. I didn't think that was anywhere close to good enough. I hired a lawyer and made an appeal to the commissioner. The commissioner appointed a mediator. Some time later the mediator basically told the commissioner she wasn't getting any responses from the Ministry of Health.

The Ministry of Health made a response to my appeal but asked that it be kept confidential, which dragged the proceedings out to the point that my lawyer and myself did not see the Ministry of Health's response to our appeal until early January. We responded to that response at the end of January. The Ministry of Health responded again. We did a follow-up just recently and it is now, as I understand it, totally in the hands of the commissioner to make a ruling for or against. I understand from the media, she has promised to make a ruling before Bill 159 goes back to the Legislature.

Why should I care, other than just stubbornness and a bit of pride in my record? I'm not an alcoholic, I'm not hysterical. I can be a little bit angry at times. I thought that was a blot on my record. I have since learned that it could also be a significant hindrance to getting life insurance, to getting a mortgage, if I want to have a mortgage. An employer would be very interested in a record of that nature.

I'm a sheep farmer. I have had some predation. I use a gun occasionally when I have to. As with everybody else in the province who has firearms, I have to have a firearms acquisition certificate. I understand that Bill 159 will make it much easier for law enforcement officers to have access to my medical records, along with everybody else's. At some point, this may get married up and I'm going to have some really interesting questions asked of me by the police when I go to register one of my guns or to renew my certificate to have a gun.

I am not an isolated case. The doctor pled guilty to almost $600,000 of fraudulent records; mine is about 1%. I think there's a significant number of other fraud investigations going on through the fraud programs branch of the Ministry of Health. There are also just plain mistakes made. It's not that hard for a stenographer to enter the wrong number or the wrong billing record. You go in and you think you're being treated for bursitis and maybe your records show you had a heart attack. A citizen should have a right to have incorrect records corrected. I think that's pretty common sense.

Are there any questions?

The Chair: We normally go in rotation. You've left us about three and a half minutes per caucus.

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Mr Wood: That was a very clear presentation. I have no questions. Thank you very much. We appreciate your coming by and giving us the benefit of your views.

Mrs McLeod: In our technical briefings a week and a half or so ago, the Ministry of Health indicated that Bill 159 would allow an individual who wanted to make a correction to the health record to appeal a refusal from OHIP to the privacy commissioner. I want to read subsection 50(9):

"The individual is entitled to make a complaint to the commissioner ... if the custodian does not make the amendment requested by the individual and does not comply with clause (3)(b)"-which is the provision for the attachment of a statement of disagreement-"but is not entitled to make a complaint to the commissioner ... if the custodian does not make the amendment requested by the individual but complies with clause (3)(b)."

I read that very clearly as saying that your ability to appeal to the privacy commissioner to get your record corrected, as time-consuming a process as it has been for you, is lost under that clause of Bill 159, because all the government would have to do would be to attach your statement of disagreement. Can I ask whether that is also your reading? Is it one of the reasons why you have come forward?

Mr Murray: That's exactly my reading. That's my lawyer's reading and that's my reading.

Mrs McLeod: I'm not sure if it's fair to ask you to speculate, but in your situation the government itself has established fraud in this case. There is clear evidence produced by the government that there were fraudulent billings and therefore your medical record is, of necessity, by their own evidence, incorrect.

Mr Murray: Yes.

Mrs McLeod: Why? What reasons have you been given as to why the government would not simply make the correction, when it's so obvious by their evidence that your record is incorrect?

Mr Murray: I honestly don't know. It's been suggested that maybe it's a cost-saving thing. As far as the dragging out of my case, it could be that there's a hope that Bill 159 will be passed as is and there won't be any more unpleasant people like myself coming forward wanting to have their records corrected.

Mrs McLeod: What concerns me is that there are not many people who, first of all, find out how inaccurate their record is and, second, are prepared to come forward to highlight what I think is a very real concern. The fact that the legislation takes away even the right you have now to have that appeal to the privacy commissioner is certainly something that needs to be changed if this bill goes forward in any form.

Mr Murray: May I say that if I had it to do again, I wouldn't have done it. My legal bill is outstanding. It's large. It significantly exceeds my annual income. So I wouldn't do it again. I wouldn't recommend anybody else do it again. It's got to be a more streamlined procedure. I'm sorry, that's a little bit off the topic.

Mrs McLeod: Not at all.

Mrs Pupatello: Can you explain the implications of C-6 to your case? For example, we heard from the federal commissioner that this law is not in parallel to C-6 and if it were taken through a court proceeding, it may be struck down or whatever. This implies to me that there is some level of protection under C-6. Is that some angle that you're considering, or how do you see its implication in this case?

Mr David Baker: Ian has passed that one over to me. Our understanding is that under C-6 there is a power to correct, but that legislation is held in abeyance while provinces decide whether to occupy the field or to bring forward legislation that is comparable to the federal legislation. So there will be two questions. One is, will there be legislation which is comparable? I guess there are discussions about whether 159, without a right to correct, is comparable to C-6, and then, if there is no provincial legislation, C-6 would prevail. So essentially what 159 would potentially do is prevent people from benefiting from the right to have your record corrected under C-6, as well as removing the right that exists now under FIPPA, or the Freedom of Information and Protection of Privacy Act.

Ms Lankin: I'd like to pursue that issue. I'm thinking, in addition to an amendment which eliminates this out for the health care custodian, their duty to correct, perhaps the committee should be looking at something more explicit in terms of the absolute right of a person to have their health record corrected, and a procedure for that.

In particular, I'm also thinking of a responsibility on the part of health information custodians, where they become aware there may be problems with an individual's records, to actually advise the individual and to seek out the correct information.

As I understand it, a number of your neighbours who were treated by this same doctor were not called by fraud investigators or detectives. They only needed to review a certain number of cases and a certain number of files to have enough evidence to take to a criminal proceeding. So many people have not been informed, yet their files could be as wildly inaccurate as yours. Is my understanding of that correct?

Mr Murray: Yes.

Ms Lankin: Would you see this legislation perhaps going a step further as being of assistance to people?

Mr Murray: Yes, that would be nice. I can't speak about legislation. I was in municipal government. I had trouble enough with simple municipal bylaws, to get a bylaw right. It must be very difficult to write meaningful, effective legislation. I will say I was quite surprised, in thinking of it, why the Ministry of Health, when they realized these records were fraudulent, didn't just make the corrections without being asked. I'm really astounded that they seem unwilling to make the corrections even when asked.

Ms Lankin: One of the things we're hearing over and over again from those who argue that there has to be an ability to track individuals' private health information across systems with identifiers, for research purposes or other sorts of things-it surely has to hit you right in the head when you hear a case like this-if the information they're relying on is OHIP-based information and there isn't an absolute duty to correct the record, let alone a right to appeal, it compromises many other aspects of health care research and data amalgamation and other sorts of things.

You have raised some circumstances of how it can affect the individual. I don't know if you want to elaborate on that, but I think in one of your documents you referred to an article about a company called Second Opinion. That might be interesting for the committee to hear about.

Mr Murray: The company that Frances Lankin is referring to, written up in the Star, is offering a service to employers: "If you want somebody's health records, we'll get them for you. We'll go to friendly doctors or maybe friendly doctors' stenographers and get the information." It's not just me, Ian Murray, saying to a prospective employer, "Yes, check into my records." They can get that information another way if they want to. As the databases get more and more effective, let's say, it's just going to be easier to get information. I just hope that in most cases it's correct information. What use is false information to anybody?

The Chair: Thank you very much, Mr Murray, and your colleagues, for coming down here today. Unlike you, I am covered by parliamentary privilege and I hope you have a satisfactory resolution to your matter.

Mr Burke: Mr Chairman, I look at the clock. Can I ask for one minute?

The Chair: You certainly can have one minute.

Mr Burke: Just simply to say that I'm here to support this very brave man who has done what ought to be done in the public interest.

I have been refused insurance myself. The claims against me are about $8,000, comparable with my wife's, similar to his: alcoholism, hysteria, mental problems and so on. I have been refused insurance by Liberty, with whom I had done business for 12 years, ever since we came to Ontario. I was not given renewal coverage and I was not given any explanation. It may well be that they had a look at my records. This affects my children, as you know. "Do you have the following illnesses etc; any history in your family?" If they say no, they may be accused of lying. If they say yes, they're refused etc.

I would just like to make one comment to wind up, and that is, my wife and I voted for this common sense government, the Common Sense Revolution, and if there's anybody here in this room who can tell us where the common sense is in this-where is the logic? Why is this being done? Why are we put at risk? Why would a government undermine itself? And finally, this throws into question the integrity of the medical profession, to which we all entrust our lives. Why? To support some bureaucrat? Surely not. Is there a hidden agenda here? Where is the common sense? If you could tell us, we'd appreciate it very much. Thank you.

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The Chair: Again, I think we all look forward to Ms Cavoukian's ruling. My sentiments apply to you and your wife as well and anyone else on Amherst Island who's been similarly afflicted. I wish you all the best. But thank you very much for coming and bringing your perspective before the committee here today. We appreciate it.

Ms Lankin: Briefly, Mr Chair, there was a reference to an article in the Toronto Star about a company by the name of The Second Opinion. That article appeared on Monday, January 8, 2001. It was authored by Tyler Hamilton. Also in that same edition of the Toronto Star, in section E there was a special report on privacy that contained three or four or five specific articles around this issue of privacy. I was wondering if we might ask that copies of all of those articles be produced for the committee for our reference.

The Chair: I'm sure we can get those for you very quickly.

ALGOMA AIDS NETWORK

The Chair: Our next presentation will be from the Algoma AIDS Network. Good afternoon and welcome to the committee. Please proceed.

Ms Kate Adams: Thank you. Everyone has the submission from me in front of them. I am with the Algoma AIDS Network. We are a non-profit AIDS service organization serving the needs of people infected and affected by HIV/AIDS in the Algoma district, which is 44 communities, 12,000 square kilometres, to be exact.

The staff and board of the AAN works hard every day to ensure our clients' privacy rights with their health issues are adhered to. As indicated in the original request to attend the hearings today, the Algoma AIDS Network endorses a bill that protects the most sensitive of information for the people of Ontario, that being health records, but we cannot support Bill 159 as it reads.

Prompted by a call from a client voicing concern with the bill, I have come here today to speak about the importance of keeping health records confidential and the right to privacy for people having HIV/AIDS. My colleagues from HALCO have made strong recommendations today, recommendations which my agency endorses. Therefore, I will not go over them once again. Instead, I would like to share with you two stories as an example of when a person's status is disclosed without permission.

I bring to your attention the highlighted area on attachment A-1, which is at the back of the presentation. This is an excerpt from a page of a life story written by a young client of my agency. She writes:

"Now that I was becoming healthier, I decided to return to school. I was so afraid of what my friends were going to say. Little did I know that no one knew what was going on. They were very excited that I was back. When two months had slowly passed, a nurse came to my school to talk to my friends about it. They were all given papers and pamphlets to bring home for their parents. Receiving this news, you would think that the parents would have felt sorry for me. But no, they immediately attempted to have me removed from school in order to keep their children safe. So out of school I went and the huge arguments began. Yet again, my mom fought day in and day out for my freedom and rights. Even though the ignorant and intolerant adults did not want me to come back, my mother had won the battle and I was back"-in school-"where I belonged, with my friends."

The client was nine years old when faced with the struggle of rights and freedoms. Now 16 years old, several years have passed and this client is trying to lead a normal teenage life, wanting all the things that teenagers want: a job, a boyfriend and good grades. But with everyone knowing their HIV status, this proves to be difficult. You live your life under a microscope and you are open to persecution.

My second example took place a few weeks ago, on February 8, 2001, to be exact. On this day, my agency had two clients in the hospital on the same floor and in the same ward. After watching client A leaving client B's room, the nurse working the afternoon shift approached client A. The nurse asked client A to speak to client B because client B was not eating and client A might be of help as they were both going through the same things, that meaning HIV and AIDS. The nurse was completely out of line, to say the least, as it was unknown as to how the two clients had come to know each other. For all anyone knew, they could have been old family friends, not aware of each other's HIV status. The situation was a potentially dangerous one as clearly client B's health status was disclosed without consent. I'd like to add that client A refused to talk to client B for that very reason.

Our clients have good cause for concern when they read Bill 159 based on the examples given. The ripple that occurs when too many people have access to private health information is truly frightening, and our PHAs fear that incidents just like the examples used will occur time and again as health professionals begin to interpret Bill 159 as is.

Therefore, I have one recommendation to make to the committee today, and it is that Bill 159 be withdrawn and the Ministry of Health and Long-Term Care be instructed to redraft the bill, where the bill truly embraces a public health privacy model and meets CSA standards.

In conclusion, I would like to thank you for the time today. I urge this committee to send this bill back to be redrafted.

The Chair: We have just over four minutes per caucus for questions. This time, we'll start with Ms McLeod.

Mrs McLeod: Just to start off, I appreciate your examples. I think in both examples the health care professional was out of line according to what we would expect in terms of the protection of confidential information.

Ms Adams: Absolutely.

Mrs McLeod: We heard the earlier presentation this morning, obviously, saying that Bill 159 does not have satisfactory answers as to how to protect the client's privacy.

Can you suggest what needs to be in place, though? One of our concerns is, if we just say let's not proceed with Bill 159, and we don't have anything else in its place-because it's very difficult legislation to draft-what are we left with? Based on your examples, I'm concerned that what we're left with are inadequate ways of protecting the privacy of that health information. The people from the regulatory colleges, the College of Nurses, might suggest that we have that framework for ethical standards and protection of health information now through the colleges. Do you think, for example, that a complaint to the College of Nurses could have been a way of dealing with the breach of confidentiality in these two cases or is that just not strong enough now?

Ms Adams: It is one way of addressing the situation. Client A feels very strongly about it and is going to proceed. However, the damage is done. The person breached the confidentiality, and although the guidelines by the college are there and put into place, this person still acted outside those confines.

My interpretation of Bill 159 in terms of protection is that this was what could have been considered in good faith, which it was not. Therefore, I think we have to go back and look at it and make it that much more clear in terms of how a health custodian acts. I don't know that I am comfortable with "in good faith." This was done in good faith-

Mrs McLeod: The definition of "reasonable"-

Ms Adams: So was the explanation as to the children in school with my client when she was younger, that this was done in good faith. Yes, it was done in good faith. These children were going to be protected within the confines of the classroom. It was when the children returned home that the parents overreacted and my client's status was released to the rest of the community. It was a hardship on that family and has been to this day. That client still faces situations. The other day, outside of the schoolyard, one of her friends was not happy or pleased with her, and she said, "Oh, don't touch me. I don't want to catch what you've got." That is what she has to live with, and that is on a larger scope because it was disclosed by a health professional.

Mrs McLeod: Your examples really bring to life the importance of that excuse on the basis of what is considered to be reasonable, which was raised earlier this morning.

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Ms Adams: In answering you, it needs to be clearer and it needs to be more defined, and black and white, absolutely, so that there isn't a situation such as that again.

Ms Lankin: If I understand the plea you're making to the committee, it's not to do away with the bill and not bring it back. In fact, you believe there's a need for greater privacy protection than exists now.

Ms Adams: Absolutely.

Ms Lankin: But this bill falls short of the mark of what's required; is that correct?

Ms Adams: Exactly. Our interpretation is that it can pass. Bill 159 just leaves it open to pass through so many hands that it does not garner confidentiality.

Ms Lankin: I think when we have real-life examples, it makes it much easier for us to understand. This morning, in the presentation from the HIV/AIDS Legal Clinic, we heard reference to studies that have been done on the anonymous testing program in place in Ontario. I remember at that point in time there was a big controversy about whether this was the right way to go. I heard compelling evidence from people that without that protection of privacy, and in fact anonymity, it would have an incredible chilling effect on individuals' willingness to seek treatment and to seek help. In so many aspects of our lives, and particularly if we suffer from a disease or some disability that has a stigma attached to it-and there are many different kinds that have stigma-that's a reality for people to live with if that information is disclosed. I wonder if you have any more information on the studies around the anonymous testing, on what any of the numbers were. Did it in fact increase the number of people proceeding with testing and getting help?

Ms Adams: I'm not sure in terms of the numbers on the Ontario scale. I will speak to you about what happens in my agency when I answer the phone and somebody says, "I think I need to have a test." When I'm speaking with them, I give them the three options: nominal, non-nominal and anonymous testing. The only person who has ever taken me up on a nominal test, which is your name test, was because they were going to work in the States and they needed to have it. All of the tests I have made referrals to for the health unit to do testing have been anonymous, except for one, in a two-year span. People are very closed when it comes to the thought of "What happens if I'm HIV-positive and what does this mean to my life?" It's not enough just to fight the disease. The stigma attached is so severe it can ruin your life.

I have a client who lived on St Joseph's Island who received a piece of mail that had a red ribbon on it from an AIDS service organization sending them a newsletter. Within a day, Richards Landing knew this person was infected, and that was only through speculation and that was only through one piece of mail. It ruined his life and he had to move from Richards Landing. Therefore, privacy is essential for people living with HIV because the stigma is so harsh.

Mrs Tina R. Molinari (Thornhill): Thank you very much for your presentation. Just a question on the example you gave about the nine-year-old in school. You indicated-quoting the individual-that a nurse went into the school to talk to the friends about it and they were given papers and pamphlets. As you were reading, I thought that was just an education session for the students in the school, but what I gather from this is that the student was actually identified among all the friends.

Ms Adams: Absolutely. The education was meant to enlighten the children, and yet it was pointed out that it was very much the student who was sitting there. That was the reason she was there.

Mrs Molinari: Was that done directly or was it implied? This seems to me a very disturbing situation, if that in fact happened in a school where students are getting an education on an issue and yet there's one who's being specifically identified.

Ms Adams: It was. You're going back a certain portion of time. That's why the HIV education module is in the Ontario education system now. It was born out of that case in point right there. The education system has changed and has been worked so that children are educated on HIV, but very little was known when this happened to this child in particular.

Mrs Molinari: How long ago was this?

Ms Adams: About seven years ago. I'd like to point out that that accounting is her accounting. It made it much more personal than even the newsreels I have watched in the past because it was what she went through, what she was bearing. It makes it all the more emotional than watching the newsreels as to when that actually occurred.

The Chair: Thank you very much for taking the time to come before us here today. I know it's a long trip and we appreciate your perspective.

COLLEGE OF PSYCHOLOGISTS OF ONTARIO

The Chair: Our next presentation will be from the College of Psychologists of Ontario. Good afternoon and welcome to the committee.

Dr Catherine Yarrow: Good afternoon, Mr Chair, committee members. Thank you very much. I'm Catherine Yarrow. I'm the registrar for the college, and with me is Mr Gordon Rimmer. He's a public member on the council of the college.

I'd like to outline briefly the things I'll be talking about and then I'll just summarize them at the end. First of all, I'd like to say that the college believes this legislation to be very important and comprehensive. We hope that this time it sees its way through the House. There's certainly been considerable discussion about this type of legislation now for the past two decades. We believe the legislation has a number of positive features, one of which is the inclusion of unregulated providers and researchers in the definition of health information custodians. We think it's important that these groups are included.

We also think the section on the quality-of-care provisions is very important. The consent concerning personal health information is a strongly written section and important. The sections which provide for disclosure where there's a potential risk of serious harm and which preclude access where there's a risk of harm are certainly provisions we've been advocating for and strongly support. Sections allowing for disclosure of college proceedings are also sections that we consider important to our functioning.

There are areas I'll speak to that we have concerns or would like to see clarification on. We have a concern that private insurers do not appear to be covered by this legislation. It's not clear whether the Ministry of Consumer and Commercial Relations will be promulgating legislation which will cover that off or whether the federal legislation, Bill C-6, will cover that off.

The other area I'll speak about is some possible ambiguity around school boards and how they fit in, whether or not they're custodians within the meaning of this act. We think there's still some ambiguity remaining possibly respecting the functions of committees of the regulatory colleges.

Finally, we'll speak to an issue relating to the health colleges as custodians, particularly where it relates to issues of amendment of records.

As I mentioned at the outset, we do have a concern that insurers don't appear to be covered under this legislation. There are certainly many protections for providers within the health sector and there are opportunities under this legislation for custodians to release information to other persons who may be covered under other acts. The restrictions on those persons who receive that disclosure we're not sure are sufficient to protect the clients of the insurers, both disability insurers and automobile insurers. We also have some concerns that the provisions for use of information outside of Ontario are, at this point, fairly non-specific and in collecting information it appears as though it may be quite difficult for a health information custodian who's collecting information to provide sufficient information about potential disclosures to an individual, to have that individual give informed consent to the collection of that information.

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With respect to school boards, the school boards are covered under the freedom of information and protection of privacy legislation. There are health professionals who do work for school boards. Psychologists-I guess the other professions, nurses, can speak for themselves-provide both educational services and health-related services. Some of the educational services are covered under the Education Act and information is required to be on the Ontario school record and is accessible to parents under certain conditions. But the health professionals such as psychologists and psychological associates also provide health services of a confidential nature relating to adjustment difficulties a child might be having, anxiety, depression, family difficulties. It appears under this legislation that the psychologist or psychological associate would be a health information custodian with the appropriate obligations, but it's not quite clear how those records and the provisions of this legislation would interact with any requirements under the freedom of information and protection of privacy legislation, which talks about personal information, mentions psychological information. But I think it's a little bit confusing right now and perhaps some more clarification around that application would be helpful.

With respect to the section in part II of the legislation that speaks to non-application of the act, it's not clear that it specifically excludes health information collected or created for the purpose of proceedings of health regulatory college committees, whether it covers all college committee functions. Quality assurance committee seems to be quite well covered. It's not clear whether other committee functions, including registration, fitness to practise, complaints and discipline are adequately covered in this legislation or whether the RHPA provisions would prevail. We would recommend that the RHPA provisions do prevail in any cases where there's any ambiguity or apparent conflict.

Under part III, it's not clear whether section 16 will allow college employees, agents or investigators to obtain health records relevant to an investigation or an inquiry under the RHPA or whether this is dealt with sufficiently elsewhere in the legislation.

Under part IV, consent concerning personal health information is a very important section, quite thoroughly written. As I say, our only concern is whether or not the consent for collection is sufficiently informed when it comes to possible disclosures where no further consent will be sought.

We're very pleased to see that if a health information custodian believes that there's an imminent, significant risk to someone's safety, whether it be the individual about whom the health information relates or to another individual, that disclosure is permitted under this legislation. That's consistent with other legislation and our own standards of practice.

We're also very pleased that health information custodians may disclose personal health information for proceedings that are dealing with the competency or the conduct of members of health professions because we rely very heavily on this type of information. Similarly, any assessment of a member of the college where there's an issue of fitness to practise, we're pleased that this legislation appears to allow for disclosure of that information to the college.

We're also pleased with the protection for the quality assurance provisions. While most of the quality-of-care provisions appear to relate to risk management in facilities, it appears that this will cover the college's quality assurance program and we hope that proves to be true when it actually comes to the application, because it's quite important that this information be collected in a way that members can be candid with the college about their developmental needs, their professional development plans, and not have any fear that that information would be introduced into a civil proceeding. It appears that this legislation protects that.

Finally, with respect to the college as an information custodian, this legislation would require the college to amend a health record that was held by the college, as it now stands, if the individual about whom the information pertains requests an amendment, or else the college would be required to write a note of disagreement and append it to the record. The college, as a regulatory body, does not collect health information for the purpose of providing a health service, but rather for the purpose of regulating the profession in the public interest. The college would not be in a position to evaluate the appropriateness of any request to amend a health record, as the college is not creating the original health record in the first place. It would also, in addition to placing an unrealistic expectation on the college, add the administrative burden of having to notify others to whom we have provided this information in the context of one of our proceedings of the request for an amendment and the college's either amending or refusing to amend it. I would suggest to you that in every case the college is likely to refuse to amend a health record because we would not be in a position to evaluate the appropriateness of making such an amendment and would much rather see that be carried out by the originator of the health record than by the college. It would be unfortunate if this then resulted in reviews being sought by the privacy commissioner and tying up that system unnecessarily for an amendment and a provision which may not really have been intended to capture the colleges, but has done, as the legislation currently stands.

When it comes to the regulation-making authority, we would like to suggest that consideration be given to exempting the colleges from the provision for health information custodians, provided that you're satisfied that the Regulated Health Professions Act covers all of these same duties of privacy and duties around consent and disclosure that this legislation would cover.

To summarize, then, this is important legislation, it has a number of positive features which we hope will be maintained, but we do have some areas of concern and areas where we think there may need to be some clarification.

I'd like to ask Mr Rimmer, as a public member, to recount for you one or two situations which he has actually been acquainted with which suggest some further cautions around how information is managed by health information custodians.

Mr Gordon Rimmer: My main concern has been that with many of the cutbacks in funding, the small agencies have done what they can to economize on office staff and so forth. In many cases you don't have a secretary or a receptionist. If you go into an office, as I have had the experience to do, a small psychiatric clinic-I was there to set up an appointment with a counsellor. I found the outer door of the office open but there was no one at the reception desk. The door to the counsellor's office was closed and muffled voices could be heard, so obviously someone was there. I decided to wait until they were finished their session. The phone rang, and I guess the counsellor decided that they were going to just let the answering machine answer the phone call. That was fine, except the answering device was in the outer office and I could hear the person who was making the call identify themselves, identify their problems, and any confidentiality went out the window. I didn't see anything in these regulations that covered the answering devices.

The other thing that I would be concerned about, these answering devices have tapes and they save some of this information. I just wondered, does this tape become a part of the client's confidential file?

Dr Yarrow: Mr Chair, we'd be happy to entertain any questions of the committee if there is time.

The Chair: We've got approximately a minute and a half per caucus.

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Ms Lankin: You're the third college that has come forward and expressed a desire not to be a health information custodian, so I think we're getting that message loud and clear.

One of the other things you've said which echoed the other colleges' presentations was that where there is a conflict between the RHPA and this legislation, the RHPA provisions should prevail. I really worry about that kind of blanket provision. I would like you to tell me where the conflicts are that you see, what the problems are, and why the RHPA provision is superior. We already have some general concerns about parts of the legislation which allow legislation like the Ontarians with Disabilities Act and the Ontario Works program to be exempted completely, and about the minister being able to exempt anything else that he or she wants at some point in time. Do you have specifics that you can give us about what provisions you're worried about and why the RHPA provisions are superior to the Bill 159 provisions?

Dr Yarrow: The main thing is that it's more a question of whether the legislation here is sufficiently clear so that it might be accomplished either way. For instance, under this legislation, section 16 allows for "the collection, use, disclosure, retention or disposal of information ... in the course of the person's duties for or on behalf of the custodian." We're wondering whether this is sufficient to cover college investigators who are sent out by the college to gather information in the course of conducting a complaints investigation, or whether that needs to be covered elsewhere. Elsewhere, custodians are allowed to disclose to a college.

We just want to be sure that nothing restricts in any way the investigative authority we have when we appoint an investigator under the Regulated Health Professions Act. The reason for that investigative authority is to ensure that, wherever a health record is relevant to our protecting the public interest, we're able to obtain that without undue invasion of anyone's privacy, but to ensure that it is possible and that there is no opportunity for someone to hide behind any legislative provision and argue that they shouldn't be accountable to the college for those services, or that as a facility they shouldn't provide those.

Mr Wood: If I might take it back to the question of correction of the record, you explained the difficulties you had with respect to correcting the record. What do you think the answer is? Should we say that you have to go to the person who originated the record to correct it?

Dr Yarrow: I think where that person is still living and available, that would be preferable, inasmuch as I think that person would be in a better position to judge the appropriateness of making that correction. We are essentially secondary or tertiary custodians by the time the information gets to us and not in a position to give a clinical opinion. If it's a matter of a client or a patient or a person wanting an amendment to a matter of fact about their health status, for instance, we would not be in a position to properly evaluate that. So I think, where feasible, it would be preferable that that correction be made by the originator, the creator of the record.

Mrs McLeod: I think this is an appropriate question to the college as opposed to the field practitioners. I wanted to ask somebody about the changes in the age of consent to disclosure of health information-so you're it-because the Mental Health Act is quite different now than what Bill 159 proposes. You also touched on school boards in your presentation, and of course the Education Act is very different as well in terms of disclosure of information. The question would be, have there been any problems, from your experience, with the fact that children under the age of 16 can bind the practitioner to non-disclosure?

Dr Yarrow: Yes, you're right, the provisions have been very different in various pieces of legislation, and quite confusing. This legislation now parallels the Health Care Consent Act in respect of whether or not a child has the capability of understanding a decision respecting his or her own personal health information. I think there's a question of a literal interpretation of the law and good professional practice. There certainly have been situations where, for instance, school boards have been very nervous about following along the Health Care Consent Act provisions which would allow the child to make treatment decisions and, by extension under common law, decisions about personal health information, and have adhered to the stricter requirements for parental involvement in those decisions around treatment or disclosure.

In actual practice, that has put the health professionals in some difficulty. It has put members of our college in some difficulty, where a student may be wishing to seek counselling for something that student does not wish the parent to know about. It may discourage the student from seeking that assistance if there is a fear that the parent will automatically be involved. What we typically expect, as a matter of good practice-and it's more typical to the procedure under the Child and Family Services Act-is that if the child initiates a desire for assistance and is capable of understanding the nature of the assistance, the consequences of getting assistance and the consequences relating to release of personal information, that child's wish be respected; that the professional discuss early on with the child the possible desirability of involving the parents in either disclosure of that information or participation in treatment decisions; and that it ultimately be the child's wishes that prevail, unless there is a clear risk of harm, in which case, then, the professional would override the child's wishes and disclose or involve the parents, if the child was clearly at risk or the child was about to put someone else at risk.

The Chair: Thank you both for coming before us this afternoon.

ONTARIO DENTAL ASSOCIATION

The Chair: Our next presentation will be from the Ontario Dental Association. Good afternoon and welcome to the committee.

Dr Ralph Brooke: Good afternoon. My name is Ralph Brooke and I chair the health policy and government relations core committee of the Ontario Dental Association, the ODA. With me today is our director of professional affairs, Linda Samek, and our director of government relations, Frank Bevilacqua.

The Ontario Dental Association is the voluntary professional organization which represents the dentists of Ontario. We are pleased to have this opportunity to meet with you today to discuss Bill 159, the Personal Health Information Privacy Act.

We want to comment on four aspects of the proposed legislation: (1) the need to include additional categories of health information custodians; (2) consent, as it relates to the legislation; (3) consistent standards for ethical review committees; and (4) the need for a single piece of legislation that deals with health information across all sectors.

First, custodians: As regulated health care providers who collect, manage and use personal health information on a daily basis, we are wondering why insurers and other third parties that routinely undertake similar activities do not appear to be captured under the legislation. We recognize that provisions exist in the legislation that permit other persons or classes to be designated as custodians by regulations. However, we suggest that known classes of custodians like insurers should be clearly designated within the legislation as health information custodians.

Insurers have "custody or control of personal health information as a result of or in connection with performing the person's powers or duties or the work described ... " in the introduction to this section. There is no category which identifies insurers as custodians, nor is there an exemption for insurers. It is the silence of the legislation on this matter that concerns the dental community.

The Ontario Dental Association supports the stated purposes of the act. It is because of our interest in protecting the confidentiality and security of personal health information and the privacy of the individual, as outlined in section 2 of the proposed legislation, that we recommend that insurers be named as health information custodians.

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Second, consent: the legislative proposals list four elements of consent: (1) it must relate to the information; (2) must be informed; (3) be given voluntarily; and, (4) it must not be obtained through misrepresentation or fraud. The ODA supports this approach to consent which is reflective of the Health Care Consent Act. With respect to the release and use of information, we also believe that the consent for collection, use or disclosure of personal health information must be timely and current.

There are circumstances where individuals enter into a contract for services and the mere signing of the contract includes clauses which permit the continuous disclosure and use of personal health information to third parties. We recognize that it is necessary to enter into contracts for services, but we are concerned that the protection of personal health information is seldom a central focus of the contract and that there may not be a comprehensive understanding of how agreeing to accept employee or other benefits may affect the sharing of one's personal health information in the future.

Simple acts, such as agreeing and signing to receive benefits from an employer as part of a compensation package, often mean that an insurer will be authorized to receive and use personal health information without further confirmation or agreement from the individual. In these instances consent is not always informed and it certainly does not reflect the circumstances which surround future collection, disclosures and uses that flow from such a "consent."

The Ontario Dental Association recognizes that the right to privacy of personal health information is not absolute, yet in the spirit of the legislation designed to protect personal health information, it is essential to keep to a bare minimum those instances where disclosures can occur without informed consent. In an effort to address at least the timeliness of the consent, we recommend that third party payers or employers be required to inform the individual of what personal health information is to be collected and how the information will be used, including how it may be shared with any other individual, group or organization.

Further, we recommend that related consents provided to third party insurers be reviewed and renewed on an annual basis so that individuals are continuously aware of who has been granted access to their personal health information and how this information will be used.

We understand the importance of introducing administrative ease into the billing process for health care providers, however the need for administrative ease should not be permitted to negate requirements for informed consent. Clause 29(1)(c) places no limit on the personal health information that a custodian may disclose "for the purpose of obtaining payment for health care provided to the individual." The Ontario Dental Association appreciates the good intentions of this clause but believes that patients should be informed of and consent to the sharing of personal health information to third party payers.

The next point is ethical review committees. There are many institutions, organizations, individuals and for-profit companies with an interest in research involving personal health information. The diverse nature of research and researchers highlights the need to develop clear rules to guide the release of personal information for research purpose. The Ontario Dental Association believes that research proposals, projects and programs that propose to collect and/or use personal health information should be reviewed and approved by an appropriate ethical review committee.

While we support the general approach regarding the use of ethical committees outlined in the legislation, we wish to ensure that the legislation does not dismiss the good work already being undertaken by existing ethical review committees within institutions throughout the province, nor would we want to see the creation of unnecessary bureaucracy that may have a negative impact upon research initiatives. We believe that the proposed legislation provides a framework that will enable careful evaluation of existing ethical review committees to ensure that a common standard for the protection of all personal health information is applied for all research that proposes to use the personal health information of Ontarians.

And lastly, the need for a single piece of legislation dealing with health information in all sectors: as we stated earlier, the ODA was puzzled that some third parties that collect, store and use personal health information are not included in Bill 159. In the interests of establishing a common framework to protect the confidentiality and security of personal health information and the privacy of the individual to which the information relates, we encourage the introduction of a single piece of privacy legislation that will take into consideration the potential for linking and re-linking data by third parties in a manner that may allow for personal health information to be used in a way that is inconsistent with the original collection of the data.

To sum up, the Ontario Dental Association recommends that the following provisions be included in the bill:

(1) Additional categories of health information custodians such as insurers;

(2) Consent as it relates to the legislation;

(3) Consistent standards for ethical review committees; and,

(4) The need for a single piece of privacy legislation that addresses health information across all sectors.

In conclusion, the ODA supports the spirit of the legislation. We commend the government for bringing forward a bill that is vitally important to all Ontarians and we thank you for providing us with the opportunity to address the committee.

The Chair: Thank you very much. That give us about three and a half minutes per caucus. Ms Lankin has indicated she had no questions, so we will start this time with the government.

Mr Wood: I wonder if I might ask you about your point as it relates to the ethical review committees. Ultimately, somebody has to have the final sign-off. Do you think that should be a public official, for example, like the Information and Privacy Commissioner, or do you think that should be someone who is, so to speak, further down the system? Who would you recommend as having the ultimate sign-off?

Dr Brooke: I have a bias here, because when I was vice-provost of health sciences at the University of Western Ontario, the ethics committee reported to me. But I was responsible to the senate and I was quite satisfied that the senate of the university, as the final place where these things would go, was satisfactory. Within the hospital, the overall medical advisory committee would have the final say. I think that most of our public organizations such as universities, hospitals etc, are responsible enough to be the final arbiters.

Mr Wood: Why would you say that rather than someone who is chosen by the Legislature?

Dr Brooke: I think it's important that there is an overall knowledge that these ethics committees are working appropriately and I have no problem with someone chosen by the Legislature overseeing that, but these committees work well, by and large. We know that because half the people who submit documents to us complain that we're being too strict, so I think that's one measure of the ethics of those ethics committees.

Mr Wood: Those complete my questions, unless there are other questions, which there don't seem to be. Thank you very much. You've been very helpful.

Mrs Pupatello: In the scope of a dentist working on his patient, what are the protections for all of the people who work in a dentist's office in terms of right to information, their duty to seek consent and their disclosure-the protections for those patients?

Dr Brooke: It's absolute. Anyone working in a dental office has to know that every single piece of information that comes their way is to be regarded as absolutely confidential, the same way it would be in a medical office.

Mrs Pupatello: Is each one of those positions within the office subject to a particular college that outlines that?

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Dr Brooke: Yes, they are, the hygienists to their college and the dental assistants to their college. A secretary would not be, but secretaries act as confidential agents.

Mrs Pupatello: Because they are mandated by some colleges?

Dr Brooke: Because they are informed that this is confidential information.

Mrs Pupatello: Why would the ODA focus on third party insurers in the discussion of this bill?

Dr Brooke: Where we see what we feel is something that is missing, we have the right to point this out to the committee.

Mrs Pupatello: Your example was interesting about how people don't realize, when they're signing on, what they are signing on to, and I agree with that. What I want to get is your opinion. When signing a contract to take on a job, you need to sign the contract, and then by signing the contract you also happen to be agreeing to pass on all your personal health information. If you don't sign the form, you likely don't get the job. There's a whole world of discrimination that goes on there that is very difficult to fight and gives insurance companies-

Dr Brooke: That is in fact coercion.

Mrs Pupatello: There is no protection, at least none that is obvious, that doesn't discriminate against you. In the meantime, you don't get the job. That seems to be the reality out there.

Are you aware of what insurance companies might do with personal information in addition to reviewing what level of benefits that person might have?

Dr Brooke: I'm not fully aware of that. I don't know whether Ms Samek or Frank-

Mr Frank Bevilacqua: The principal concern relates to the fact that dentistry is largely outside of the public sector in terms of payment, so by and large we deal with third parties. The issues revolve around the nature of the consent and whether or not it's informed and whether a general consent for allowing a practitioner to transmit a claim to an insurance company electronically gives that insurance company the right to request all sorts of supplementary information beyond what's required for payment of a particular claim or for assessing liability in terms of whatever contract they administer.

With respect to dentistry, a lot of it is transmitted through EDI, and the consent that generally is signed and which a practitioner holds on record in the patient file allows the dentist to transmit the information that's in that claim. So a lot of our issues revolve around additional requests for information where in fact the patient has not provided a consent to release specific pieces of the record which the insurance carrier or dental consultant may be requesting.

Mrs Pupatello: So then the dentist is put in the centre of passing on information to meet the needs of the insurer-the patient needing to pass it along in order to be insured-and you are just along for the ride, passing along information that as a professional you would never do without appropriate consent.

Mr Bevilacqua: I think the major concern we expressed related to the clause in the legislation that allows a practitioner to disclose any information that's required to receive payment. We certainly are concerned about that provision in the legislation.

The Chair: Ms Lankin, you do in fact have a question?

Ms Lankin: I do. The third party who is receiving that information, is it your reading that they would not be covered by the recipient clause within the legislation?

Dr Brooke: Yes, as far as I can tell.

Ms Lankin: I just wanted that clarified. Thank you.

The Chair: Thank you all for coming before us here this afternoon. We appreciate your presentation.

ALEXANDER FRANKLIN

The Chair: Our next presentation will be from Alexander Franklin. Welcome to the committee. Just a reminder that you have 10 minutes for your presentation.

Dr Alexander Franklin: Mr Chairman, Past Minister Lankin, members of the standing committee on general government, I speak as a PC Party member and physician. Bill 159 may cost the PC Party lost votes. It will certainly cost MDs lots of money and time. There is also the $50,000 fine as an extra worry. If this bill is passed as it stands, it will make clinical practice even less attractive as compared to non-clinical medical careers.

What are the advantages to the taxpayer? The legal right to see their chart. Few do. Why not? I suggest that most do not want to be burdened with the uncertainty that is part of medicine. It has always been the case that clients who take responsibility for their health will take copies of their specialist reports when they travel.

The client is mainly worried about details of sexually transmitted disease, unwanted pregnancy, psychiatric conditions and genetic disease being used against them, with possible monetary loss and social ridicule. Even with maximum paper security, one's presence at a specific hospital clinic or at a special hospital such as Princess Margaret gives a good clue as to the diagnosis. Mailing information is not secure unless signed for. There is the risk that the post could be opened by third parties. The chart may also be seen by different agencies: the College of Physician and Surgeons, MD assessors, review committees, appeal boards. Lawyers can, of course, demand reproduction copies of the whole chart. Insurance companies, like credit agencies, have central records of medical information. OHIP has diagnostic and treatment codes which can be matched to a name and address. No government in the world has ever been able to prevent secrets leaking. Medical secrecy is only possible if one's face is not known internationally and one receives attention in a different continent using an assumed name and paying with cash.

To put this bill into practice will cost a lot of tax money in material and time. Hospital records will have to be protected with metal grilles or kept in locked cabinets. Levels of security clearance would be established on a need-to-know basis. The present uncontrolled access to hospitals would have to change, with proper identification of visitors. The $500,000 corporate fine would make this necessary. MDs would also have to buy locked storage facilities and a burglar alarm system to prevent a Watergate. The Ministry of Health should reimburse MDs for the extra expense, similar to a business development grant.

I suggest that voters be told of the taxpayers' cost of this bill: commission expenses, medical administrative costs, legal expenses. They can decide whether all this is worth the price at a time when the Ministry of Health is short of money for essentials. Thank you.

The Chair: Thank you. You've left us about two minutes per caucus for questioning and we'll start this time with the official opposition.

Mrs McLeod: I hear some of the concerns you've expressed about the cost of implementation of the bill, but it leaves me with a concern about your sense of the level of security of patient records now. Are you suggesting that there is a fair bit of access in physicians' offices to patient records now beyond what is absolutely required for health purposes?

Dr Franklin: I don't quite understand the exact nature of the question. Can you make it slightly more cogent?

Mrs McLeod: Sure. You're suggesting there's a great deal of cost involved in having to meet the privacy provisions of this bill, and I'm just wondering how those costs are greater than the current privacy positions that any physician would take. If there is a lot more cost involved in implementing this bill, that gives me some concern about how perhaps lax the privacy provisions are in physicians' offices.

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Dr Franklin: May I ask whether your physician is a solo physician or one of a group?

Mrs McLeod: Let's say a group, as opposed to my spouse, yes.

Dr Franklin: I think you can go to most groups and you'll see as you come in a whole wall of charts and they are open, vertical stacks. That I think speaks for itself.

Mrs McLeod: The physicians are governed, as we've been hearing all morning with other colleges, by a fairly rigorous set of rules about the protection of the privacy of those files. Are you suggesting that those rules either are inadequate or that they're not being followed?

Dr Franklin: The rules are being followed, but things speak for themselves. I'm sure in your group practice you visit, you see the other charts behind the receptionist's desk. When you go in you see the receptionist and usually the charts are filed right up to the ceiling. There's no metal grille, usually. The reason I asked whether it's solo or group is that a solo practitioner can afford to have steel cabinets-I have had them for a quarter of a century-but in a group there are so many doctors that they just don't have the room; the space is very expensive. As I say, you can see for yourself when you go in what security there is, and there's as much security as one can have in that situation. I think that answers the question.

Ms Lankin: My question was on the same point. It's nice to see you again, Dr Franklin. Many people who are criticizing this bill from a very opposite point of view to yours are saying that this bill actually is about enabling access to private health information in a whole range of circumstances: the mandated disclosure, discretionary disclosure, on and on. Often we've been told that the Hippocratic oath that physicians swear to, along with the provisions under the self-regulatory scheme in their college, is a stricter standard of privacy than what is actually being proposed in this bill. You obviously have a different opinion, and I'm wondering if you could spell out for the committee what it is in the nature of the bill that you believe would require a physician to take greater privacy protection measures than the Hippocratic oath and the College of Physicians and Surgeons currently do?

Dr Franklin: The situation actually, as an aside-it doesn't really make all that much difference-is that not all universities require the Hippocratic oath. The University of London doesn't, and when I took my Canadian qualifying examination they didn't and in the USA one doesn't. However, $50,000 does make one more alert to the question of security. It's a question that medical practitioners couldn't practise if people thought that information was going elsewhere. They simply would be out of business. The second thing is common sense: who is going to confide in you once your reputation has gone? It only takes once to happen.

Apart from the legal side, there's the professional obligation that you don't disclose. In fact it's very sad when the courts force disclosure. The power that the lawyers have to actually have a photocopy of the whole chart, cover to cover, is quite frightening.

The answer to your question I think is $50,000.

Mr John O'Toole (Durham): Thank you very much, Dr Franklin. On a lighter note, I think what you said earlier gives me serious question to re-examine this bill. I hope you take that in the right line.

Ms Lankin: It may cause the rest of us to support it, Mr O'Toole.

Mr O'Toole: More on the same tone, you mentioned in your second-last paragraph that there would be a burden for alarm systems and security measures similar to Watergate, you call it. Watergate wasn't a computer issue; it was a hard file issue. My point to you today is, what security do we really have outside of unlocking the door and walking in and getting whatever you need? The public today think that all these records that are in paper format are somehow more secure than something in a data format. I question whether there is the security that patients would like to be assured of in today's format.

Dr Franklin: Mr O'Toole, you're quite right. The security depends to some degree on how the physician wants to protect their property. I personally for the last 30 years have always used a burglar alarm system, which interestingly enough has not prevented me being burgled twice. However, there it is. Once it was through a small opening which a child could get through, but that's an aside. A burglar alarm system does help, and as a solo practitioner I can afford to have steel cabinets. In a group practice, as I mentioned before, it's much more difficult. One would really have to go into a major investment for large steel cabinets or some grille which could be moved across and locked at night. Of course, a determined burglar can get through that, but it's a reasonable protection.

I didn't want to elaborate in the text, but there's also the problem-and a dental colleague mentioned it-of part-time workers. The summer program for students is an excellent program and certainly a great help to the student and to the practitioner. They can't really be held to oaths of any secrecy. So there is always the human weakness which comes into this. I think that's generally understood. But then most charts don't really have all that much which is of interest to anybody. Most charts are really quite dull, and really why would anyone particularly want to look into them? It would be rather a waste of time.

The Chair: Doctor, I'm afraid I'm going to have to cut you off there; we've gone over time. Thank you very much for coming before us here today. We appreciate it.

ALLIANCE FOR LIFE ONTARIO

The Chair: Our next presentation will be from Alliance for Life Ontario. Good afternoon and welcome to the committee.

Mrs Jakki Jeffs: Firstly, I would like to thank you for the opportunity to appear before you today. My name is Jakki Jeffs and I'm executive director of Alliance for Life Ontario. We are the provincial coordinating body for all of the local educational pro-life groups in Ontario. Joining me today is Mr Geoff Cauchi, a lawyer by profession and a volunteer member of our board of directors. He is also our volunteer legal counsel. Mr Cauchi has given presentations to a number of our local groups since 1995 on the lack of respect for parental rights in the Health Care Consent Act and the Substitute Decisions Act.

Almost exactly five years ago, in February 1996, we made a detailed presentation to the standing committee on the administration of justice on Bill 19, which was the bill that became what is now the Health Care Consent Act. We have included with our written materials distributed to you today a copy of the Hansard record of our presentation then. We also have a history of involvement in the consultation process of previous efforts of the government to legislate in the area of personal health information. We have made three previous written submissions on this subject, all included in the material that has been handed out to you: a letter dated August 20, 1996; a letter dated February 27, 1998; and a most recent letter dated October 9, 2000, in response to the Ministry of Health's consultation paper dated September 2000.

The members of the committee might be interested to know why an organization like ours is so concerned about the parental rights aspects of Bill 159. We were first alerted to these issues when we received a copy of a letter issued by the Association of Sexual Health Professionals of Ontario to its members in 1991, calling on them to lobby the Rae government to change the bill that eventually became the Consent to Treatment Act. The bill contained a presumption that children under the age of 16 were "incapable" with respect to medical treatment decisions, the implication being that health practitioners would normally have to have the consent of a child's parent before proceeding with a medical treatment. The association was up in arms that this presumption would greatly hinder the ability of abortionists and other family planning professionals to continue to provide confidential services to teens. Within a matter of months the bill was radically changed. The presumption of incapacity was replaced by a presumption of capacity at any age, and all health practitioners were given the sole authority to determine whether or not a child was capable with respect to a proposed treatment.

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We don't think these two events were a mere coincidence. In fact, we believe that (a) this radical social policy change that now affects how all forms of medical treatment are provided to children would not have come about but for the lobbying efforts of the abortion and family planning industries and (b) the reliance by legislators on a supposed need to respect the confidentiality of children as a justification for negating parental rights in legislation like the Health Care Consent Act and Bill 159 is disingenuous. The whole process has been akin to a group of foxes lobbying the town council for a law prohibiting chicken farmers from putting wire fences around their chickens on grounds that the fences unduly restricted their freedom of association with the foxes.

Of course, the Consent to Treatment Act became the Health Care Consent Act under the Harris government and, despite our voice of warning, the Harris government missed an opportunity to correct the anti-parent aspects of the legislation. From a public policy point of view, the legislation has been a disaster. Secret abortions and chemical contraceptives for teen girls have not resulted in true autonomy for children. Instead, confidentiality has been used as a cloak to protect the family planning industry from being held accountable for the devastating injuries these girls often suffer and for its systemic abuse of the concept of informed consent. At the same time, parents who later find out their daughters had these secret abortions now have to help them pick up their shattered lives and wonder how it came to be that the school health nurse or their own family doctor could deceptively arrange the abortion behind their backs and then claim this was all legal and none of their business.

We have our own Rosa Hartford and William Saturday cases. They just don't seem to get reported in the Toronto Star. It is because our organization does get wind of these tragedies that we have been moved to come before you here today.

Bill 159 is infused with the same extreme vision of child autonomy in medical matters that guides the Health Care Consent Act. It is our faint hope that someone in the Legislature will finally step forward and stop this madness. We draw your attention to an important article, in the appendix of our written materials, by Bruce C. Hafen and Jonathan O. Hafen, entitled Abandoning Children to Their Rights, originally published in First Things, August/September 1995. The authors warn legislators against incorporating into statutes "an autonomous view" of children's rights that is "more based on choice than needs" of children. They conclude with the following words: "Despite increasing autonomy rhetoric, the American legal system limits children's autonomy in the short run in order to maximize their development of actual autonomy in the long run. This approach also encourages development of the personal competence needed to produce an ongoing democratic society composed of persons capable of autonomous and responsible action. To short-circuit this process by legally granting, rather than actually teaching, autonomy to children ignores the realities of education and child development to the point of abandoning children to a mere illusion of genuine autonomy."

Keeping the personal health information of dependent children from their custodial parents will only give the abortion and family planning industries further protection from accountability. These industries seem to know better than most people that intensive parental involvement in the lives of their children is not good for their businesses and, conversely, anything that frustrates that intensive involvement is good for their business.

I now turn the balance of our time over to Mr Cauchi.

Mr Geoff Cauchi: In analyzing the bill, what I have tried to do is reduce to its most basic terms what it means for parents of dependent children. Let me use the little time I have to list the messages the Legislature is giving to all the parents of Ontario with Bill 159. We have developed specific recommendations on certain provisions of the bill, and they are detailed in our written presentation, but I will leave any discussion of them to the question period and save my time for more general comments.

I have identified four basic messages this bill sends. The first message is, we as the government can no longer trust you parents to make good decisions for your children, and our distrust is so deep that we must, by statute, no longer permit any parent in Ontario to decide when their child is ready to make adult decisions about the collection, use and disclosure of their personal health information on their own. Instead, we will appoint a government agent who works in our state health care system as a health information custodian to decide whether or not your child is capable of making the decision herself. We will let this person make this decision (1) without your knowledge, consent and input and without giving you an opportunity to challenge that decision in a court of law; (2) even though he may have a conflict of interest in the outcome of the decision, that is, he may have a dogmatic position that no parent should know about their child's health care or he may personally benefit from a decision not to involve the parents in the sense that it can help insulate him from liability for injuries he may have caused the child in his capacity as a health practitioner; and (3) he may be a stranger to your family and have known your child only briefly and, therefore, not have had any reasonable basis on which to decide that your child is capable of making her own decision.

The second message is, you as a parent will no longer have the right to know your child's health record. We will now decide when it is appropriate for you to know it. If the health practitioner, who could be the same person as the information custodian who performed the treatment that is the subject matter of the health record, had decided your child had the capacity to give her own consent for the treatment, we have now decided the records of that treatment are none of your business.

The third message is, we will henceforth let your child have free access to her own personal health information, regardless of your wishes. We don't care that you may think there is some very sensitive information in her records that you think she may be too young to handle at this time. Again, we can't trust you to responsibly make that decision on her behalf.

The fourth message is, if in the rare circumstance one of our state health practitioners does find your child is incapable with respect to a proposed treatment, we will henceforth let you have access to her personal health records, but only if we think you need it to make the treatment decision or to prepare plans for her continuing care, otherwise we will give you access to her records only if your child says it's OK. And if she says it's OK, we will also dictate to you the limited purposes for which you can use the records.

All in all, Bill 159 is an incredible insult to the parents of Ontario.

Mrs Jeffs was quite accurate when she spoke of the disastrous impact the Health Care Consent Act has had on parent-child relationships and the health of children. We predicted in our presentation in 1996 that the presumption of capacity at any age, the legal right of the health practitioner to rely upon it and the relief from liability clauses would combine to give family planning practitioners something akin to diplomatic immunity from liability for injuries that result from their so-called treatments, and this has come to pass.

At that time, we also provided legislators with empirical evidence of the positive impact on the incidence of teen pregnancy in several American jurisdictions of parental notification and/or consent statutes for abortion. We can now also point to a 1998 study published in the Journal of the American Medical Association that indicates that opposition by parents to contraception for their teenage children is protective and effective in reducing rates of teen pregnancy. That's a study by Michael Resnick and others, entitled Protecting Adolescents from Harm: Findings from the National Longitudinal Study on Adolescent Health, JAMA, September 1998.

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Who knows whether Ontario's policy of secrecy between children and parents is actually encouraging more teenagers to engage in risky sexual behaviour, thereby contributing to higher associated social costs? I invite you to spend some time going through the case histories we have included in our appendix to illustrate the fruit of such a policy in other jurisdictions.

Consider the case of the high school teacher from Illinois, William Saturday. He carried on an illicit affair with a minor female student for 18 months and during that time got the school's own clinic to put the student on the chemical contraceptive Depo-Provera. The school clinic, relying on its policy of confidentiality, kept the affair and the treatment secret from the girl's parents during the whole time.

Consider the Pennsylvania case of Rosa Hartford. Her son, an adult, had impregnated his girlfriend, a minor child. Unknown to the girl's parents, Rosa took it upon herself to take the girl out of state to have an abortion. Her parents thought she was in school. The boy was convicted of statutory rape and Rosa was convicted of the statutory criminal offence of interference with custodial rights. There is no such statutory offence in Ontario.

These cases happen in Ontario, too, but they don't receive much media attention. In my own home region, a high school counsellor told a girl's parents that she needed their daughter to babysit for her late into the evening and on that ruse obtained their consent to the girl staying overnight. In fact, the counsellor had arranged an abortion for the girl at a Toronto abortuary the next day and spent the prior evening helping to prepare the girl for the ordeal.

The parents knew nothing of the pregnancy and were obviously deceived by the school health officials. I spent an afternoon speaking with these parents. They were not pro-life. They might have even concurred with the abortion, but you should have seen the look on their faces. Their home, their lives had been violated by agents of their own government. I sympathized with them, but had to tell them that although what had happened to them was intolerable and probably unconstitutional, it was perfectly legal under Ontario statute law.

The Health Care Consent Act and Bill 159 share a fundamental constitutional flaw: they both fail to make a simple and basic distinction between adults and unemancipated minor children. We maintain the position we pressed in 1996: to be constitutional, any statute dealing with important decisions that arise during the developing years of a child's life must recognize a prima facie parental right to make those decisions for the child, and that right should end when the parent's support obligations under the Family Law Act end. This would mean an absolute outside limit of 18 years, but parental rights could terminate after the child attains the age of 16 and has either married or withdrawn from parental care and control.

Recognition of this threshold would be consistent with the social truism that whoever has the responsibility must have the power. It is also a threshold of adulthood on which we believe there is wide societal consensus. This distinction needs to apply in virtually every area covered by this bill, including the following: (1) the child's access to her own records; (2) the parent's access to the child's records; (3) consent to the collection, use or disclosure of the child's health information by parties outside of the family; and (4) substitute decision-making in respect of all of the above.

For the sake of those parents who feel that their otherwise dependent children have earned the right to autonomy in respect of health information decisions, we would not oppose an exception whereby children over the age of 16 who have the written authorization of their parents would be treated the same as adult individuals under the statute, in other words, those children possessing a written waiver of the parents' right to veto their decisions. We would also not, of course, oppose an exception in the case of an emergency, where the custodial parent is not available.

Back in 1996, I took a legislative committee through an analysis of the Supreme Court of Canada's 1995 decision in B.R. versus the Children's Aid Society of Metropolitan Toronto, coming to the conclusion that the bill that became the Health Care Consent Act would not likely pass a Charter of Rights challenge. If you review the Hansard record of that 1996 presentation, you'll see the committee accepted the very dubious notions put forward by the Attorney General's lawyers that (1) everything the judges said in that case about parental rights was obiter dicta, or mere comments in passing; and (2) the decision could be ignored in drafting the legislation.

Since 1995, that decision, particularly the judgment of Justice LaForest, which was highly supportive of parental rights, has received much positive judicial comment in subsequent cases. In addition, the court has recognized a new source for parental rights in the charter, the section 7 security-of-the-person right. I have detailed these comments and the new cases in the end notes to our written presentation. Suffice it to say that we remain more convinced than ever that neither the Health Care Consent Act nor Bill 159 could survive a charter challenge based on parental rights.

To sum up the legal and social principles at stake here, I don't think I could be more eloquent or profound than Judge Luttig. In the recent case of Planned Parenthood versus Camblos, the US fourth district Court of Appeals upheld the constitutionality of a statute that requires a teen girl who seeks an abortion to either give notice of this intent to her parent or seek a court order to bypass the parent. The judge said parents "are obliged to know, and they are entitled to know, the life-defining decisions their children face. To hold otherwise, we are convinced, would be to turn child from parent and parent from child at the very moment in life when each is most in need of the other. Such a plenary violation of family the Constitution cannot be construed to require. Were it so, right would be they who said that with arrogance implacable we had our foundation rent asunder." Thank you.

The Chair: Thank you both. You've timed it perfectly. That exhausts our 20 minutes, but we appreciate your taking the time to make a presentation and specific recommendations to the committee.

Ms Lankin: Mr Chair, the presenters made reference to appendices, which I don't see attached.

The Chair: You should have a big packet that was on your desk when we came back from lunch.

Ms Lankin: I don't appear to have it.

The Chair: The clerk will bring you another copy.

Ms Lankin: Thank you.

CLAUDETTE GRIEB

The Chair: Our next presentation will be from Ms Claudette Grieb. Good afternoon and welcome to the committee. Just a reminder that you have 10 minutes for your presentation.

Ms Claudette Grieb: I would like to present these pictures. They are of my dead children and I need them here with me in spirit.

The Chair: I guess I should ask, Ms Grieb, if you were here earlier when I read the notice to one of the other groups about parliamentary privilege.

Ms Grieb: No.

The Chair: This is not in any way to influence your presentation except to point out to you that from time to time in the past we have had individuals in particular making presentations who might not be as familiar with this as some of the groups that appear before us regularly. While the MPPs enjoy parliamentary privileges and certain protections pursuant to the Legislative Assembly Act, it's unclear whether these privileges and protections extend to witnesses who appear before committees. For example, it may very well be that the testimony you've given or are about to give could be used against you in a legal proceeding. I caution you to take this into consideration when making your comments. I just raise that. A previous presenter actually mentioned specific doctors, so I just wanted that to be before you.

Ms Grieb: All right.

My name is Claudette Grieb. I am here today to speak for two people who have died as a result of malpractice, my daughter and my granddaughter. An uncertified therapist allowed to practise in Ontario is responsible for their deaths. The therapist is still in practice, protected by our existing federal and provincial laws and guidelines. Her colleagues at the Community Justice Initiatives on Stirling Avenue in Kitchener are also still operating, aided by government funds, using deadly therapy-the bogus therapy of recovering hidden memories of incest. I know, because I am in possession of the counsellor's receipts and the group therapist recommendations and questionnaires given to my deceased daughter. In the questionnaires, my mentally ill and suicidal daughter repeatedly reported that she was "hatin' and suicidal." Neither the unqualified counsellor nor the group therapist got proper medical care for my seriously ill daughter. Instead, the therapist kept probing her confused mind about incest that never took place. They insisted that this was the cause of her mental condition and that she had to confront the perpetrators to get better.

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Meanwhile, these delusions drove her to suicide and the murder of her infant daughter, my dear grandchild. Following suggestive therapy, my daughter came home to me with the most horrible false accusations. She came to believe that she had been sexually abused at the age of two. That was the age of her own infant at the time. Memory experts, as well as plain common sense, tell us that it is impossible to have any reliable memories from age two. My daughter's unqualified therapist working in an Ontario government-supported clinic did not know that.

Instead, without contacting us, without corroborating any of my daughter's delusions, without checking the medical history of my daughter, this therapist recommended that my suicidal daughter divorce herself from her family and deny us access to our granddaughter, Dagmar. This dangerous advice cut my daughter, and especially little Dagmar, off from the most valuable lifeline for support-her loving parents and our son. Instead of recommending solid medical treatment, my mentally ill daughter was instructed to sit in a closet with a teddy bear so she could get in touch with the "little one inside." Meanwhile, little Dagmar was left in mortal danger.

When we were confronted with our daughter's bizarre recovered memories, the counsellor in question determined that if we denied her findings then we were in deep denial. Two weeks after the murder-suicide of my granddaughter and daughter, I phoned the counsellor in question. She then lied to me, saying she "had little knowledge of my daughter." It was her turn to be in deep denial.

What are the facts? I then confronted her with the fact that, according to the homicide detectives, she was indeed Jackie's counsellor. She then owned up to knowing my daughter after all. She refused to discuss my deceased daughter with me, stating, "I cannot disclose any information of the therapy because it is confidential."

I am the estate trustee to my daughter, without a will. I've got all the medical notes from all the doctors and all the clinics, and I even have the pathology reports, the post-mortem reports. Yet I am not allowed to have the notes of this criminal, this quack. This counsellor had also slandered my family to the homicide detectives as well, informing them of my daughter's beliefs acquired in therapy. Those records are also sealed. I want all these records made available. I am here representing my dead children. They no longer have a voice. It is more than clear to me that our laws and regulations are protecting the fraudulent activities of quacks, in this case, a quack who milks the money of single welfare moms. That's all our tax dollars, folks. I know because I have the receipts. They're in front of you.

Moreover, our provincial government, as well as the federal government, still funds this unscientific and obviously dangerous type of quackery, now proven worldwide to be destructive. It is called recovered memory therapy. In clinics in this province one can still obtain the out-of-date books and pamphlets from Health Canada. They were written between 1988 and 1992 at the height of the recovered memory fad. Yet anyone can still download them from the Web site, advocating-still in 2001-this totally discredited therapy.

The major professional mental health groups in Canada, the United Kingdom and the USA have condemned this kind of suggestive trauma search therapy. No warnings of the sort are to be found about it on our provincial and federal health Web sites. The most blatant example of caustic material-my daughter had it-is still approved by Health Canada. The distributed literature is the 1988 book The Courage to Heal. This book, according to all mainstream professionals, has caused the destruction of thousands of innocent families. In Canada alone, I know of over 2,000 families who were suddenly confronted by a son or daughter after therapies convinced them, "You have the symptoms, now find the memories."

I know, because I have met over 100 of these parents. I am one myself. I will present to you later a study to show that this bogus therapy is responsible for a very serious decline in the health and functioning of those who fall victim to it and that it has led to numerous iatrogenic suicides. Remember that word, folks. That is death caused by the healer. Ever since the first warning about recovered memory therapy appeared in the Toronto Star in 1992, the provincial government of Ontario has failed to act. By excluding Bill 155 from the contents of Bill 159, you not only remove accountability that mental health practitioners should have to face, but the provincial government also removes itself from being responsible and accountable.

Child sexual abuse is a very serious issue. Therapists should support their clients who report such abuse. It is clear that government concern over this issue has totally blinded our elected officials to the fact that false accusations arising out of suggestive therapies do occur. A false accusation of child abuse is also a very serious issue. Many judges, at a meeting in Windsor some years ago, were originally told by Ontario's former Attorney General, Marion Boyd, "False memory syndrome is the invention of criminal lawyers." The judges disagreed because they had seen cases based on false recovered memories go through their courts. Meanwhile, federal laws closed the avenue to people having access to the records of malpractising therapists and people falsely accused were thereby denied to make full answer and defence in these so-called recovered-that is, false memory-cases.

There have been many cases where judges tried to open records. The most recent is the one by Justice Oliphant of the Manitoba Court of Appeal who said this month: "[The complainant's] references to flashbacks, repressed memory and recovered memory are all matters of a serious and abiding concern on my part in terms of her credibility." He wants to see those records made available to him. A man's liberty is at stake. I also want to see my daughter's therapy records. I want what my daughter's therapist said to the police made available to me as well. I want them because they will show malpractice. I want to know what pressures were put on my daughter to come up with an explanation for her mental condition.

She was already bipolar, she was already suicidal, and paranoid schizophrenia runs in the family. There was also drug abuse in my daughter's past. What did those drugs do to her brain? Did the therapy help her? She answered that most dramatically. She killed her daughter and herself by hanging. And you knew, you all knew.

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The citizens of Ontario should be warned about these suggestive practices. The Canadian Psychological Association, the Canadian Psychiatry Association and most forcefully the Royal College of Psychiatrists have spoken out against these stupid practices in 1996, 1997, and the year of my children's death, 1998. I will show you their statements on the issue. You have them before you. Yet we are still waiting for the federal and Ontario governments to act by withdrawing financial support to the clinics that still engage in this kind of quackery. We still allow unqualified and unlicensed therapists to engage in it.

The government of Ontario has neglected to warn the public about the following, namely that recovered memory therapy is based on the nonsensical belief that many people do not remember that they are victims of incest and that suggestive therapy will make them remember. Recovered memory therapy is the mental health equivalent to the tainted blood and thalidomide scandals. No protectionism. My MPP, Mr Martiniuk, and my MP, Mr Peric, have ignored my pleas for help and have engaged in buck-passing. Today, I am here before you representing so many of those who have no voice and I demand action. My fight will continue, because innocent lives will have to be saved. This matter will be also presented to the Minister of Justice.

My daughter and my grandchild will not have died in vain.

If you would like to have the recommendations, they are here as well.

The Chair: Thank you very much, Ms Grieb. In fact, I've let you go well over the 10 minutes. It's a very serious issue, and I'm sure I speak on behalf of all the committee members. We feel very badly for the circumstance you find yourself in here. We appreciate the courage you've shown in coming forward and bringing us this issue.

Ms Grieb: I accept your apology and I plead with you to do something before the deaths of other mentally ill people.

The Chair: If you want to call that an apology, that's fine. I thought I was expressing commiseration, but thank you again.

RICHARD SPEERS

The Chair: Our next presenter will be Dr Richard Speers. Good afternoon. Welcome to the committee.

Dr Richard Speers: Thank you very much. Mr Chairman and members of the committee, I'd like to thank you for allowing me to speak to you today. In the past I have served on the CSA privacy committee's implementation committee and as the chair of the ethics committee of the Canadian Dental Association. Today I'm before you representing no organization whatsoever, but speaking from my experience on these issues.

Personal health information about us constitutes a collection of probably the most intimate details of our existence. In order to seek relief from a condition, patients will reveal highly sensitive details of their lives to health care workers, with an understanding that their secrets will be maintained. Without such a mechanism, it is well known that patients may withhold information that may be vital to their care.

Although the Minister of Health has acknowledged that "no information about the individual is more sensitive than their personal health information," the bill before us opts for administrative convenience and efficiency over the human rights issues and the internationally accepted protections awarded patients and their information. It remains to be seen if the recommendations of Justice Krever in 1980 will become hurdles to overcome or goals to achieve.

In looking at this bill, I think we have to consider some of the human rights that have already been awarded.

As a basic human right, article 12 of the UN Declaration on Human Rights states, "No one shall be subjected to arbitrary interference with his privacy."

We're all familiar, I think, with sections 7 and 8 of the Canadian Charter of Rights, which have awarded "everyone the right to liberty and security of person" as well as protection "against unreasonable search and seizure," which the courts are more and more interpreting as privacy-protective rights.

In 1992, the Supreme Court of Canada in the case of McInerney v MacDonald opined that "confiding information to the physician.... gives rise to the expectation that the patient's interest and control of the information will continue." As well, it acknowledged that "information revealed to a doctor.... remains, in a fundamental sense, one's own."

Bill 159 lays the groundwork for conducting research on identifiable patient information without the knowledge or consent of the individual. This mechanism is in direct conflict with the Declaration of Helsinki, which is the international research code that governs human experimentation. This declaration also applies to identifiable patient information. It places a burden of consent on the researcher and puts the interests of the individual above that of science or society. By virtue of Bill 159 we would be protected only by an ethics review board that would be only as good as its membership.

If I can quote the past Privacy Commissioner of Canada, Mr Bruce Phillips, he stated that, "Allowing health bureaucrats and researchers to represent the patients' interests risks putting Colonel Sanders in charge of the chicken coop."

Secondary use of patient information by groups such as insurers, employers and financial institutions poses serious risks to patient care itself. I believe that any group that routinely collects and assesses personal health information should be captured by this act.

In passing the Medical Checks Act of the Netherlands, the Dutch concluded that the collection of information for secondary purposes primarily benefited the collecting agency. I've appended that as a separate copy. I couldn't get it to all of you. This act places burdens and limitations on the secondary collection of health information by these groups. As well, the Dutch have followed the Declaration of Helsinki in drafting guidance for medical research on human subjects and identifiable information.

Given the real protections offered Europeans of their health information, I question whether the bill before us would survive the scrutiny of the European Union or the OECD. By virtue of the OECD guidelines, which will "prohibit the sharing of personal information to states that do not offer similar or superior privacy protection," we could be shutting Canadian business out of world markets unless we enact a bill that offers substantially better privacy protection.

I would encourage the committee to recognize the pressing need for a health information bill to be passed, but not at the expense of human rights. I believe that an amending process can be successful, but it will require a philosophical change. The bill is more than just defining the mechanics of information sharing; it represents the future of how we will interact with each other and respect our right to personal security and self-determination.

I would suggest the committee carefully consider amendments that would include awarding primacy to this bill; that Bill 159 be expanded in scope to include the standards applied to all health information protection, including secondary use by insurers, employers and financial institutions; recognize the threat to health care and autonomy by unrestricted secondary use; and to impose the Declaration of Helsinki as the minimum standard for human experimentation in Ontario. I have appended Helsinki for everyone here. Helsinki also claims primacy over local legislations and ethical codes.

We should also recognize the right of the patient to control the disclosure of personally identifiable information. We should recognize as well that patients won't always make "the right choice." We should implore the minister to develop higher standards for protecting patient information within the bureaucracy, because at this time there's no mechanism to separate your photograph from your health care utilization.

If anyone was to go back to Krever and read the evidence of the venereal disease fun run, you can appreciate the importance of that.

If we are insistent that patients are to have no control over the direction of their health information, we will have rendered each patient as nothing more than an information package. We will succeed in turning each medical encounter into a research opportunity and we may well evolve a mechanism of conscripted care-all in the name of efficiency.

Without the protections to which I allude above, we will open the innermost secrets of the individual to scrutiny. Surely, if the state does not belong in the nation's bedrooms, we should not subrogate one of the most basic human rights to the elixir of efficiency and convenience. I thank you for listening to me.

The Chair: Thank you very much. You've left us a couple of minutes for questions, and I'll give the time to Ms Lankin.

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Ms Lankin: Thank you, and it's nice to meet you in person. I appreciate the comments that you raised in our earlier conversation and here today.

Two things: you've provided a copy of the Medical Checks Act to the clerk, and we will all be receiving a copy of that. Could you give us some detail about how it differs in thrust from this bill? Secondly, the Helsinki document which we have a copy of here, again in terms of research and privacy, how is the balance different than what's being proposed here?

Dr Speers: Here there's a mechanism. The default is not to privacy protection, the default is to the benefits of the community at large, where Helsinki specifically says the patient is primary to science and society. So right away we're defaulting backwards in my estimation.

With respect to the Medical Checks Act, they've pointed out that the sharing of your health information for such things as insurance and employment are hardly voluntary activities, since you need an occupation and you probably need to borrow money to have a house to live in, so these become less than voluntary disclosures. There are limitations on the scope of information and how it's collected.

Ms Lankin: What you're proposing then-this act proposes to regulate the health sector.

Dr Speers: Yes.

Ms Lankin: What you're saying is we need an act that regulates the privacy of health information irrespective of what sector it is in.

Dr Speers: It's how we deal with health information, because what you're doing is taking, I guess, a hodgepodge and replacing it with a patchwork.

Ms Lankin: OK. Thank you.

Dr Speers: Sorry to be so blunt, but that was one of the motivations for this bill.

The Chair: Thank you very much, Doctor, for coming before us here this afternoon.

Dr Speers: You were easier than the federal government.

Interjection.

Dr Speers: No, they had more time. Thank you.

The Chair: I'd argue we'd rather listen to the proponents speak than ourselves.

INSTITUTE FOR CLINICAL EVALUATIVE SCIENCES

The Chair: The next presentation will be the Institute for Clinical Evaluative Sciences. Welcome to the committee.

Dr Andreas Laupacis: Thanks very much for the opportunity to present to you today. I believe you're receiving some material. My name is Andreas Laupacis. I'm the CEO and president of ICES. I was planning a PowerPoint presentation today, but the material isn't working. In the material you have in front of you are the slides that I am going to be speaking to.

First of all, ICES would like to start by stressing that we believe in the importance of the confidentiality of health information and in the need for privacy legislation. At the same time, we believe that research about the delivery and outcomes of health care improves the well-being of Ontarians. In our view those two beliefs are compatible.

ICES was established in 1992 and is physically on the campus of Sunnybrook and Women's College hospital in Toronto. Our mandate is to evaluate the effectiveness, quality, equity and efficiency of health care in this province. We receive arm's-length funding from the Ministry of Health and Long-Term Care and other granting agencies, and we work with many other stakeholders such as the Heart and Stroke Foundation of Ontario.

I'd like to give you one example of the kind of research that we do so you'll have a sense of what our work is about, and this relates to bypass surgery waiting lists. In the late 1980s, it came to attention that people were dying on cardiac bypass surgery waiting lists and the question was raised as to whether Ontario had enough capacity for bypass surgery and whether high-risk individuals were being treated quickly enough. A study was organized that attempted to delineate the extent of the problem and to develop an urgency rating system. Out of this study came the decision to increase the capacity for bypass surgery in this province-the Ministry of Health provided increased funding to do so-and a triage system was put into place, which is still in place today and ensures that patients who are at particularly high risk of dying while on the bypass surgery waiting list will receive priority. Benchmarks were established which established a maximum acceptable waiting time for these individuals. This research led to a decrease in the deaths on the waiting list.

The same group then looked at the outcomes of bypass surgery in this province and developed what we called hospital report cards, which provide for all Ontarians information about the outcomes of bypass surgery at all hospitals that perform bypass surgery in this province. We're pleased that Ontario now has among the best outcomes after cardiac bypass in the world. So I present this to you as an example of the kind of research that really does lead to improvement in the outcomes of patients in this province because of the change in the way in which health care is delivered.

In terms of what we do, what kind of data ICES holds, we hold a large amount of data that varies from administrative through to clinical studies. By "administrative data" we mean those data that are routinely collected to monitor the performance of our health care system: for example, data on admissions and discharges that are collected by the Canadian Institute of Health Information. By "clinical studies" we mean those studies that are collected on individual patients or that information that's collected on individual patients in a particular study. We collect information that crosses that whole boundary.

We're very proud of the fact that since 1992 there have been no breaches in confidentiality related to the data that ICES holds, and we believe this attests to the importance in which we consider the issues of confidentiality and privacy.

First of all, we have a number of policies and procedures in place. We have strict employee confidentiality agreements, with dismissal being sanctioned for breaking those agreements. We have multiple internal privacy policies and procedures. I have to approve each project, and we have a privacy impact assessment that's filled out on each project, which is in the material that was handed out to you. We have internal and external information access and confidentiality committees. We've developed a privacy code with the help of David Flaherty, the former privacy commissioner in British Columbia, that's based upon federal Bill C-6 and Willison's Principles, and we have our own privacy officer.

We also have very strict regulations about how our data are used. Our data are used only for research purposes. All data that we receive are anonymized by two senior staff and replaced with a unique ICES identifier. What we mean by that, for example, is the health care number that may be attached to an administrative data set that is sent to us is stripped and replaced by an ICES number that has no meaning whatsoever in terms of identifying an individual patient.

The research that we do is about the health care that Ontarians receive as a population, not individually, and therefore our data and our results are always presented in a summary fashion. We do not disclose individual data under any circumstances. We require ethics review board approval of all our projects involving patients or their records, and personal information that is collected from clinical studies is not used for other purposes without permission. Without exception, all health data are considered to be sensitive.

We also have physical security measures in place. We have a locked facility with tracked coded-key access and video monitoring 24 hours a day.

I'd like to highlight the fact that the computer upon which our data is housed is moated, which makes it completely inaccessible from the outside. So if someone were to hack into my computer and have access to my network and my e-mail, that individual would still not have access to the computer that houses the database, because it has no physical connection with the outside world.

I'd like to address the difficult issue of why individual consent is not always possible in epidemiological and population-based studies, and I'd like you to think back to the example of the cardiac bypass waiting list that I presented to you before. Individuals who die, unfortunately, often provide the most crucial information in an epidemiological study. In the example that I used about individuals dying on bypass waiting lists, if one didn't have any information about those individuals it would be very difficult to make changes to the way in which those patients were being managed. Many individuals move or cannot be contacted and this isn't a random event. It may be that individuals of lower socio-economic status actually move more frequently and therefore are more difficult to be contacted. We look at trends over time. For example, the bypass waiting list study evaluated what had happened over three to four years, and you can imagine going back three to four years and attempting to contact individuals who had been on the waiting list four to five years ago. This becomes a very difficult and insurmountable task and indeed raises issues ethically, I would submit, about contacting individuals so long after the fact. In our view, it is very difficult, if not impossible, to do some of these very important epidemiological studies and obtain individual consent for all of these studies.

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Finally, I'd like to make some specific comments about Bill 159. We're concurrently named as a health information custodian and we would anticipate that we would be so named in Bill 159. We support the important role of privacy evaluation by independent research ethics boards that is outlined in the bill. We would, however, suggest that projects that are approved by research ethics boards should not be disclosed directly to the minister or others. That would be one exception we would take to the bill as currently written.

In summary, our key messages are: the research that ICES does is important. Without it, the health of Ontarians would suffer. Good research requires good information. We take data privacy and confidentiality extremely seriously and we are always re-evaluating our policies. Now we'd be delighted to answer any questions that you have.

The Acting Chair (Mr Joseph Spina): We have 12 minutes. That's about four minutes per caucus. I think we begin with government members.

Mr Wood: I gather some of your research could be done with consent in the sense you could get a representative sample and simply use that to do your research. Would that be correct? You don't have to have the whole universe to do all your research, I wouldn't think.

Dr Laupacis: For some studies, yes, to have a representative sample would be sufficient. In other studies-I would submit the example of bypass surgery-one would want to have all individuals who were treated at all hospitals in the province because we have no sense whether practice and outcomes would vary from hospital to hospital. In that example, I think you'd need information from all individuals treated at all hospitals.

Mr Wood: You would agree that you should not have access to information without consent where you could do it by way of seeking consent from a representative sample?

Dr Laupacis: Absolutely.

Mr Wood: The question of who decides, in other words, the ethics committee, would you have a problem if, say, the Information and Privacy Commissioner would have the ultimate signoff on that?

Dr Laupacis: To be honest with you, I don't know an enormous amount about the Information and Privacy Commissioner, but-

Mr Wood: This is an officer of the Legislature. Her appointment's confirmed by all the members of the Legislature.

Dr Laupacis: I think there would be real issues around the ability of one office to handle the potentially thousands of studies that would be done not only by ICES but by other groups. My view-and I've certainly interacted with research ethics boards in Ottawa, Toronto and Western-is that those groups represent society and do an excellent job in reviewing the proposals. Dr Williams, who's a former CEO, may want to comment.

Dr Jack Williams: The research agreement under which we presently operate for access to the administrative data was struck in 1997. That was done so that it was in accord with the framework and principles set forth in the discussion paper at that time, which was a prelude to the current legislation. That agreement was in fact reviewed and approved by the privacy commissioner of Ontario.

Mr Wood: Would you have a problem if that went into the legislation? In other words, she would set the policy. Obviously, as you rightly point out, there would have to be delegation of the work.

Dr Laupacis: My response to that would be if we could get timely access and turnaround in her response, as we do with ethics committees, on a monthly basis.

Mr Wood: One issue we have to consider here is whether or not we want to pass a law that's substantially similar to the federal law. Do you have problems with the federal law?

Dr Laupacis: I'm not a lawyer. I just wanted to present to you how we handle data at ICES and the kind of research we do. To be honest with you, I wouldn't want to comment upon the federal law from a legal point of view.

Mrs McLeod: Can I assume that a limited lockbox provision, where a patient could indicate on their record that they didn't want information shared, parts of their record shared-how would that limit the work you do now?

Dr Laupacis: I guess it would depend on how many individuals indicated they did not want to have their information looked at. If those individuals selected themselves randomly, if it was a random process, I don't think it would make a huge difference. On the other hand, if it was random it would obviously potentially bias the results of the information that we're looking at. That would be my response. Jack, any comments?

Mrs McLeod: If it were a significant take-up in terms of people blocking access to records, would you be able to function with anonymized information if the health care custodian was the provider? You say you anonymize all of your information anyway. Could you use data from the health care custodian that was already anonymous data?

Dr Laupacis: Our data is anonymized but we are able to link different records within the same person. I would have a particular ICES number in our computer now and one could link the information about my admission with my visits to a physician, so it would be important to be able to link records in an anonymized fashion. I don't know enough about the lockbox as to whether you'd be able to do that or not.

Mrs Pupatello: Just a quick question. Given all of the information we saw, it seems that you do very well without Bill 159. You do quite well. You anonymize where you have to. You have access where you have to. My question is fairly general. You're doing very well on your own in the absence of this law. Why do you need it?

Dr Laupacis: We're really responding to the law. I would agree with you. I think long before a lot of individuals or groups were looking at privacy this carefully, we have done so.

Mrs Pupatello: Is that because you're not mandated to do this, you've taken it upon yourself to do so, and because of the group currently running ICES you've done this well, but you ought to be governed under law to do this?

Dr Laupacis: No. There are clear agreements that we have with the Ministry of Health about how we utilize our data. I've only been the CEO for five months. Jack was the previous CEO so he might want to comment about the details of those agreements.

Dr Williams: Again, I would emphasize that we spent about six months working with the legal branch of the ministry, with the privacy commissioner and other interested parties because all parties wanted to make sure that we had it right. This was being done at the time of the 1996-97 discussion papers, anticipating the bill, which finally came before the House in December. We were working with the ministry to figure out how it might be, should such legislation be in place.

Mrs Pupatello: But did your work change dramatically post-1997 or post these consultations? Had you been collecting and analyzing in a whole different manner and after these consultations you changed dramatically how ICES does its business then?

Dr Williams: Basically, yes. Before, we worked on a project-by-project basis. The research agreements that we reached allowed for general use of data.

Mrs Pupatello: Allowed for general use of data by whom?

Dr Williams: By ICES as a research organization. We became essentially a designated health information custodian.

Ms Lankin: I want to follow up on that because earlier, Dr Williams, you indicated to us that there was a need for ethical review committees in universities and in teaching hospitals to tighten up their procedures. It sounds like you've just said that in 1997 or so, when the memorandum of understanding was negotiated, ICES in fact tightened up its procedures as well. In a sense, that probably does speak to the need to have some legislation and perhaps some provincial guideline that's established among the various parties with public input as to what are appropriate standards and a way of monitoring the mechanism in the legislation which allows for ethical review committees to be designated. Against what standards should they be judged would be my question.

Dr Williams: This is a very important question. As I indicated earlier, we're trying to resolve this problem at the University of Toronto. That still leaves open the issue as to what would happen with respect to other research ethics boards. Again it becomes an important issue as we're now seeing private research ethics boards coming into play in terms of review of research projects of various kinds.

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Ms Lankin: That leads me personally to assume that we actually need to have something more in terms of the framework inside the legislation than what is currently here.

In the example that you gave us, looking at the cardiac bypass registry and some of the other excellent work that ICES has done, I still want someone to explain to me why you need the actual identification and consent for following someone through in the cardiac bypass registry. If someone goes on the registry, surely they're going to offer that, "Yes, you can use this information because it's going to help make the system better if I need another bypass down the road." Why would you have to go back to get information four or five years later, like you said, and why couldn't that be covered off in the initial consent when someone goes on to the registry?

Dr Laupacis: A couple of comments. With the registries that we at ICES ourselves are developing, and we're developing one now for patients who have stroke, as part of the registry we are requesting consent to link with the administrative databases. Obviously, if individuals deny that consent, that won't happen. So I think there's been a change over the last eight to nine years in the way this has been thought about.

If one would like to know, and I submit that most people in Ontario would, whether the quality of bypass surgery in each of the institutions that perform that procedure in this province is similar, one would want to have information on all of the individuals who are operated on in that institution. The way we could do that at ICES is to take the CIHI data, which would identify individuals who have had bypass surgery, and link that with the vital statistics data which would identify those individuals who died, for example. We could therefore tell Ontarians the quality of care, if you will, in all those institutions.

We're not identifying any individual patients whatsoever, and that information is not being used to effect the care of those individual people, but it does provide us with reliable information about the outcomes in those centres, which I think is important. As one has more and more missing information one is always worried that the reasons that information is now missing may be non-random. We know that outcomes are affected by some of those non-random things.

The Acting Chair: Thank you, Dr Laupacis and Dr Williams. We appreciate your time today and your presentation.

BAYCREST CENTRE FOR GERIATRIC CARE

The Acting Chair: Our next group is the Baycrest Centre for Geriatric Care. I believe they are here. Please state your name for the purposes of Hansard and familiarity of the committee members.

Ms Gwen Yacht: Good morning. My name is Gwen Yacht and, as the director of health records and quality management for Baycrest Centre for Geriatric Care in Toronto, I'd like to thank you for allowing us to present.

By way of introduction, Baycrest Centre is an academic centre affiliated with the University of Toronto. We operate a charitable home for the aged, a hospital providing complex continuing care, rehabilitation and geriatric psychiatry services, and a seniors' residence, which taken together constitute over 1,000 beds. Baycrest also operates an adult daycare centre for seniors, a senior persons' community centre and a host of other community programs for the elderly. In total, we serve over 5,000 seniors every day. In addition, Baycrest is home to both a pure and applied research centre focusing on aging. Our Rotman Research Institute is one of the top five neuroscience research centres in the world and is on the threshold of major advances in the care and treatment of cognitive impairment.

We are a very large organization that currently operates the vast majority of services on one campus. To facilitate the continuum of care that we provide, we have one centralized health records department. In this presentation I will first discuss why Baycrest finds this legislation commendable. I will then discuss the provisions which we believe would be improved by amendment. These concern research; fundraising; one custodian operating more than one facility, program or service; and penalties.

First, in praise of Bill 159. We would like to congratulate the government on a bill well done. For years we have struggled with deciphering our obligations under the Public Hospitals Act and case law concerning the transfer of health information.

We appreciate the broad scope of the new legislation. We applaud the delicate balance it strikes between a person's right to privacy and a health care provider's ability to access health information that it requires to serve the person's needs.

Specifically, we support the removal of the so-called lockbox provision which had been included under the 1997 government consultation document. Under the new bill, a person will not be able to cut off a health care provider's access to the very information they require to provide appropriate health care to a person in need.

We support the power of clients to control if and when their personal health information may be disclosed for a non-health-related purpose.

We support the new provisions that recognize the crucial importance of quality-of-care information and research to improve health care while at the same time providing a meaningful process to guard against unnecessary and improper disclosure of personal health information.

Regarding research, we fully support the recommendations for the amendment made by the Toronto Academic Health Science Council, of which Baycrest is a member. We refer you to their brief. We think the provisions concerning research strike an appropriate balance by ensuring a flexible and thoughtful review process for research projects using personal health information.

One concern, however, is the need for the entire research ethics review body, which in most centres meets monthly, to review projects that involve no patient contact, provide no risk to patients and have adequate safeguards to protect confidentiality. Another concern is the ability of a research ethics review body to complete a timely review of such projects. Often, academic research conducted by students, for example, has short deadlines. Having to wait for a meeting and approval of the ethics review body committee could have the effect of discouraging this type of critical research.

We suggest that a research ethics review body should be able to appoint a subcommittee. The subcommittee should have the power to review and make recommendations to the research ethics board on chart review studies.

Fundraising: As you know, subsections 26(2) and (3) enable a custodian to disclose the name and address of the patient without consent for the purpose of fundraising. This exception for fundraising is most welcome. We applaud the government's recognition that health care facilities rely heavily on the financial support of the community and require a practical way to access that support. We agree that a person should have the right to request that they not be solicited for funds, and we respect these requests. But Baycrest faces a unique but important problem: most of our support comes from the families of our clients, not the clients themselves. We are a geriatric institution. Many of our clients do not have the capacity to provide the consent to enable us to contact family members for their support. Obtaining consent from our current clients or their substitute decision-makers will take time and significant resources.

As you know, fundraising is more important now than ever for long-term-care organizations because of the reduction in funding, and for organizations such as Baycrest, we must also raise dollars to help us provide culturally sensitive care. Given our elderly clientele and our reliance on funding from family members, we feel our foundation should be able to continue using names and addresses of family members of clients presently served by Baycrest without express consent in order to raise the needed funds.

We suggest the following amendment. As a minimum, we are asking for grandparenting provisions that will enable health facilities to continue using the names and addresses of family members currently on their donor lists. This would oblige us to seek consent from new clients or their substitutes to use family names and their addresses.

Regarding one custodian operating more than one facility, program or service, subsection 3(1) provides that one custodian operating more than one facility, program or service shall be deemed to be a separate custodian with respect to each facility, program or service. This provision makes sense for a licensee of several nursing homes, for example, who may operate at arm's length several facilities on different sites. However, we suspect that several health organizations, such as hospitals, coordinate related facilities or programs on one campus or perhaps on a few sites. In this context, we believe that application of the provision will not help to facilitate services nor protect privacy.

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We at Baycrest are proud of the important continuum of care we provide for those in the later stages of life. Separating out the administrative responsibilities for personal health records according to each facility, program or service we operate, despite the fact it is on one campus, would create expensive and time-consuming demands. It would also function to increase gaps in information at critical junctures compared to our present communication standard. We are relieved to see that an exemption can be made in regulations and we will rely on the government to make exemptions for organizations such as ours.

Regarding penalties, protection of the privacy of personal health information is crucial and the offence provision correctly targets those who willfully disregard or abuse it. We are pleased to note that a health care custodian, its employees, officers and directors are protected for acts or omissions done in good faith. That being said, we feel that volunteers who help us provide services and who sit on our board of directors may hesitate to do so in view of severe penalties in legislation. As a charitable organization, we simply could not exist without our volunteers.

We find the penalties for an offence in Bill 159 unduly high and inconsistent with other health care legislation and with information statutes such as the municipal and provincial freedom of information and protection of privacy acts. Even the federal Personal Information Protection and Electronic Documents Act has lower penalties.

We suggest the following amendment to subsection 73(3):

"A person who is guilty of an offence under subsection (1) is liable, on conviction,

"(a) if the person is an individual, to a fine of not more than $10,000; and

"(b) if the person is not an individual, to a fine of not more than $100,000."

Thank you very much.

The Acting Chair: Thank you, Ms Yacht. That leaves us about 10 minutes, or roughly three minutes per caucus.

Mrs McLeod: I note that you're supportive of the removal of the lockbox provision that was originally suggested, but I don't have a real sense of how that lockbox provision, which would be somebody saying they didn't want their health information revealed, for whatever reason, could actually interfere with your ability to provide care, certainly in a majority of situations.

Ms Yacht: We felt it was cumbersome. Also, we estimate that 80% of the clients we serve, both in residential and community services, have some degree of cognitive impairment. A lot of work goes into communicating with our clients. If at some stage they have placed information in a lockbox and the information is critically necessary for their ongoing care, we feel it may be very difficult to access it in a timely fashion.

Mrs McLeod: You don't think the provisions around competence to make decisions would enable you to access the information, that they provide enough freedom to access the information with substitute decision-maker agreements, for example?

Ms Yacht: With our population, change is ongoing. So when the information is placed in the lockbox all of the controls may be appropriate, and within a fairly short time the change may make it difficult to access the information.

Mrs McLeod: You indicated that you were in support of the recommendations that were presented to us earlier by the Toronto Academic Health Science Council. One of those that we didn't have an opportunity to ask about was opposition to disclosure directed by the minister. I don't know if you feel you would be in a position to comment on the concerns about directed disclosure.

Ms Yacht: I'm afraid I'm not in a position to comment at this time.

Mrs McLeod: Fair enough; I just hadn't had a chance to ask them.

Let me ask you about the fundraising issue. One of the concerns that was raised with me earlier was that the timing of the notification to somebody that their name could be used for fundraising purposes was a real issue. Is that something you think needs to be clarified in the legislation?

Ms Yacht: We do feel it is an issue that when we first come into contact with a client they are probably at their most vulnerable. It would be easy for them to feel pressured into giving consent. We don't want to put them in that position. Yes, it is an issue.

Mrs McLeod: Something preferable might be to have written notification of that go out at some subsequent time? I think there's a real sensitivity too in terms of what should be the priority in contact with the individual.

Ms Yacht: Our other concern is that we currently have 1,000 people in residential care at Baycrest and we see a lot more than that, roughly 5,000 a day.

Our concern is that the names we currently have on our donor list not be lost. We are certainly prepared to follow the directions of the government on a regulation, but we would like permission to be exempted and allowed to use those names as long as the clients are still working with us.

Ms Lankin: I might have missed something in the legislation. Is there a retroactive provision with respect to fundraising lists that foundations have? I'm not aware of that.

Ms Yacht: The legislation requires consent from all of our clients. It doesn't give us permission to use existing lists. It requires that there be a consent for everyone, which would mean that we'd have to go back.

Ms Lankin: But a foundation not covered by this legislation which currently has a list, you're saying that list becomes null and void as a result of this legislation?

Ms Yacht: That's what it appears to us. I guess we need it clarified at the very least.

Ms Lankin: That's helpful. I also wanted to ask about your opposition to the lockbox provision and set out for you what the federal Privacy Commissioner told us in very direct terms. Health information is private information. We, as individuals, own it. We have control over what anyone knows or doesn't know, irrespective of whether that information may be helpful to our long-term health care treatment decisions or recommendations from health care professionals. For the health care profession, the various aspects of it, the service providers, to say, "We need access and we need to determine what's relevant to the treatment decision we are making," is incredibly paternalistic.

I understand also that you're dealing with a particular segment of society, a large portion of whom have cognitive impairments and therefore may not be capable of making treatment decisions and/or decisions about unlocking a lockbox. But backing it up in the system, if I, at my age, made a decision about some information that I did not want shared, you're saying that from the health care professions' perspective, that's inappropriate? Or is there a mechanism that needs to be put in place, when a person reaches the point of no longer being capable of signing a power of attorney for personal care papers, assigning responsibility to a substitute decision-maker, that there's a specific section which clarifies what their intent is, then and into the future, with respect to that information, even if withholding that information means that a certain aspect of health care treatment might not be provided to them?

Ms Yacht: I think we would agree with the mechanism. I don't think we agree with the lockbox because it didn't seem to have the same level of flexibility for the type of clients that we work with.

Ms Lankin: So if the legislation somehow corresponded with substitute decisions, consent to treatment, capacity and decision-making, and indicated that, either when you are doing a living will or when you're doing a power of attorney for personal care or when you're being challenged around your capacity, there's a mechanism for that issue to be reviewed, either prior wishes determined by the individual or as there is now-if you have prior wishes in place and somehow or other there's a question of whether that is the right thing to do, the substitute decision-maker can go through consent and capacity and get a different ruling. Aren't those protections sufficient enough?

Ms Yacht: Yes, we think those are.

Ms Lankin: So we could then have a lockbox if it was linked to all of those other protections?

Ms Yacht: I guess we'd need to see it. As stated in the previous draft legislation, we found it not an easily workable solution.

Mrs Molinari: Thank you very much for your presentation. I represent the riding of Thornhill, so my constituents are quite pleased with the work at Baycrest. Also, recently the government announced 200 additional long-term-care beds, so a number of constituents from Thornhill are quite pleased.

Ms Yacht: I guess we should thank you, too.

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Mrs Molinari: You're more than welcome. Just some questions. I understand the cultural sensitivity of Baycrest and some of the fundraising you do that allows you to enhance the services you provide. Your suggestions and amendments with respect to the donor list-if you already have a donor list which is separate from your clients and clients' families, this legislation would not allow you to use that donor list?

Ms Yacht: The legislation requires interpretation. The regulations have not yet been built, that we know of. I guess we felt strongly that we should be able to use the donor list. Because that wasn't clear in the legislation, we felt that should be clarified for us.

Mrs Molinari: So this is something that you're suggesting be clarified in the regulations.

Ms Yacht: Either that or that we be granted that exemption to be able to use the existing list.

Mrs Molinari: Regarding the comments you made with respect to penalties and your suggested amendments, in reading the act, under offences, "A person is guilty of an offence if the person," and it goes on, (a), (b), (c), and in all cases it says "knowingly contravenes" or does something knowingly.

Your concern is about having volunteers being more cautious about whether or not they're going to volunteer because of the penalties. I think you're suggesting $10,000 where the legislation has $50,000, and you're suggesting $100,000 where the legislation has $500,000.

Do you think that's a really crucial part of the legislation? When I read it, it says "knowingly." So if a volunteer knowingly does that, does it make a difference how much the penalty is?

Ms Yacht: It was felt that the penalties should be more in line with other legislation. This is far in excess of any other existing legislation with respect to privacy that affects Canadians and Ontarians.

The Chair: Thank you very much for coming before us today.

REGISTERED PRACTICAL NURSES ASSOCIATION OF ONTARIO

The Chair: Our next presentation will be from the Registered Practical Nurses Association of Ontario. Good afternoon and welcome to the committee.

Ms Joanne Young Evans: Good afternoon. My name is Joanne Young Evans and I am the executive director of the Registered Practical Nurses Association of Ontario.

The RPNAO has represented registered practical nurses, RPNs, since 1958. Today we represent approximately 5,000 RPNs across Ontario who are proud members of the nursing team. Our members work primarily in hospital settings, but they can also be found in long-term-care facilities, community health facilities, physicians' offices and in corporations and educational institutions. Needless to say, our members are accustomed to working in a multi-professional environment.

We support the principles behind Bill 159 but we must stress our areas of concern about the bill and its implementation. RPNs are already becoming increasingly reliant upon electronically stored and transmitted data. Based on experience, our reservations are focused on the need to find the right balance between access and privacy.

Bill 159 unnecessarily expands the instances in which personal health information may be disclosed without the person's consent. For example, subsection 26(3) permits a health information custodian to "use or disclose the individual's name and address for the purpose of fundraising activities" without the patient's consent. Section 27 also outlines other instances in which health information custodians may provide patient information without patient consent.

Some of these instances are: to the government for the purposes of "planning or delivering programs or services of the custodian, allocating resources to any of them, evaluating or monitoring any of them or detecting, monitoring or preventing fraud related to any of them" or for a research project or program.

We are also concerned that the definition of "health information custodian" in section 2 is too broad. A health information custodian, according to the bill, can be a district health council, Cancer Care Ontario, the Minister of Health and Long-Term Care or a researcher, among others.

What the government appears to have done is to create a Pandora's box and then distributed numerous duplicable keys. We believe that health information should be disclosed for purposes relating directly and exclusively to health care, with only very limited exceptions.

The provisions of the bill, as written, have the potential to violate the necessary confidentiality of patient-provider relationships and patient privacy. We recommend that informed patient consent be required in all cases.

This leads me to our second concern: adherence to the principle of mandatory informed consent to protect patient privacy and confidentiality. The RPNAO holds that health information should not be distributed unless authorized by the patient, and that those who receive such information must take all reasonable measures to safeguard it effectively. As George Radwanski, federal Privacy Commissioner, said to this committee two weeks ago, "There is no control without the right of consent, and there is no privacy without control. It follows that the requirement for consent must be at the heart of any good privacy law."

The bill has too many potential loopholes that weaken privacy defences. Access and consent have to be married and be equal partners in every request for sharing the patient health information. We recommend standardized access request forms and procedures that include inherent audit trails. To proceed with this legislation without closing the loopholes and securing rights and protocols to access is to court disaster. Look at how loosely defined the sections dealing with access for research purposes are outlined in clauses 27(e) and 27(i). In our view, the legislation should explicitly state that identifying health information may not be disclosed if anonymous information is equally available. If personally identifiable information is legitimately required, the proposed research ethics body should arbitrate the request for information.

Achieving a better balance between ensuring patient privacy and the additional burden imposed on the custodian is our third concern. The bill stipulates that, "A health information custodian shall designate an individual or individuals who are employed by or in the service of the custodian to, (a) facilitate the custodian's compliance with this act; (b) ensure that all persons who are employed by or in the service of the custodian are appropriately informed of their duties under this act while employed by or in the service of the custodian; (c) respond to inquiries from the public about the custodian's information practices; and (d) receive complaints from the public about the custodian's alleged contravention of this act or the regulations."

RPNs already follow stringent health record maintenance and storage policies and procedures. In small practices, each employee or contractor is required to sign a confidentiality agreement. If the agreement is contravened, it constitutes grounds for immediate dismissal. Furthermore, access to health records by multiple providers is often necessary. Requiring that the custodian appoint one individual to oversee records management is therefore impractical.

Further, although it is outside the legislated scope of Bill 159, we suggest that the government help to encourage the use of electronic charting to record all disclosures. We believe that electronic charting could ensure consistency and avoid duplication across professions, especially within multidisciplinary health care teams involved in patient care. The multidisciplinary team could use one form, and each professional could add to it when necessary. In addition, with electronic charting one can obtain information such as how often the personal chart is accessed and by whom; each provider is given a PIN number. We believe this method of recording client information is not only safe but also expedites the delivery of information.

Our fourth and final concern lies with controlling third party access. As I already mentioned, our members believe that personally identifiable information should not be used if suitable anonymous information is equally available. Best efforts should be made to ensure that patient confidentiality is assured at all times. A research ethics review body, proposed in the bill to review requests for research related projects and programs only-subsection 32(3)-is a too-little, too-late control mechanism. For example, the review body will not be empowered to review requests for personally identifiable information made by other parties, such as the Ministry of Health and Long-Term Care, Cancer Care Ontario and public hospitals for fundraising purposes.

Again, when the bill addresses the issue of electronic data transfers, it fails to give section 13, which states, "A health information custodian shall comply with the requirements prescribed by the regulations with respect to the electronic transfer of personal health information," any teeth. Something should be inserted to ensure mandatory encryption, complete with a public key that serves to track and restrict access.

Records can often be linked or identified through a combination of non-unique identifiers such as birthdate, birthplace, mother's first name. We acknowledge that additional work is required to distinguish between identifiable and non-identifiable health data. In the meantime, protection can be provided by releasing data with common identifiers that have been changed in a way that does not affect the application of the data to the user. If unique identifiers are required, then they should be categorized clearly by health condition, rather than individual identifiers.

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The RPNAO supports the stated goals of Bill 159. Patient care and protection of privacy are a major preoccupation for health care practitioners. Unfortunately, we believe this bill increases third party access to identifiable patient information, thereby putting patients' privacy at risk.

We appreciate the opportunity to outline our concerns regarding Bill 159 and look forward to continuing to work collaboratively with this committee and with the Ministry of Health and Long-Term Care on implementation of the bill once it is amended. Thank you for your attention.

The Chair: Thank you very much. That leaves us just over three minutes per caucus for questioning. This time we'll start with the NDP.

Ms Lankin: You make a very strong case for increased privacy protection. One of the issues that's not on the table in this bill but was in the previous draft is that of the lockbox. You've heard us speak of that to some of the earlier presenters. Does your organization have a position with respect to the inclusion of a lockbox provision in this legislation?

Ms Young Evans: Not at this time. Our board and our membership have concentrated more on the issue of electronic charting, because we think that is actually one of the key answers to all of this, even though the bill doesn't identify it. We think that that's a better solution.

Ms Lankin: Perhaps you could give us a little more information about what you mean by that. As I listened to your presentation, I got the sense that each health care provider who needs to have access to get information has a PIN number, can get in there and has to record what they've seen, or it's electronically done. So we have a record of what's been disclosed to whom. Maybe you could elaborate on that. But also tell me, how does that address the issue of myself as a patient perhaps having information that I do not want shared, irrespective of whether that affects my future health care or not?

Ms Young Evans: With regard to electronic charting, one of the reasons we support that is we may have practitioners who go in just to look at the information. If there's nothing to report, going in just to look at the information, then it begins to show; there's a pattern that people are beginning to look for information and access records where it's not necessary to do so. OK? I'm not answering your question, am I?

Ms Lankin: No. That's OK. Is there anything else with respect to electronic charting that you think would protect people, the actual privacy of the information that's there?

Ms Young Evans: What it does is tell us who's having access, when they're having access. I think one of the things that the association also supports is the whole issue of identifying perhaps by illness, rather than by either their health card number or SIN number, whatever. Let's say it's breast cancer. So we have BC and then perhaps the mother's birthdate or something, and therefore it's extremely anonymous and it's done by the health issue, rather than by the patient. You're still going to achieve what you're looking for as far as finding out those particular data.

Ms Lankin: In terms of research.

Ms Young Evans: In terms of research.

Mr Wood: Have you had an opportunity to review the federal act at all, Bill C-6?

Ms Young Evans: No.

Mr Wood: I was going to ask you whether or not you would be satisfied with an act of that nature. You might want to take a look at it at your convenience and let us know your thoughts, what you like and don't like about the federal act.

Ms Young Evans: Thank you. Actually, what I'd like to do is to be able to pass on our national counterpart. The Canadian Practical Nurses Association has actually submitted their response on the federal legislation. I will pass that on to the committee, if it is so desired.

Mr Wood: Certainly from my point of view that would be very helpful. I thought the rest of your presentation was very clear. Those are all the questions that I had, and I think that completes the questioning from the government side.

Mrs McLeod: Following up on your discussion with Ms Lankin, can you think of situations in which it might be necessary to have identifiable information for research purposes, something more broadly identifiable, more specifically identified than you've suggested?

Ms Young Evans: You mean as far as the patient is concerned?

Mrs McLeod: Yes.

Ms Young Evans: I think the concern that we have is that as soon as you identify by patient, then there are ways of that information getting out. If it's done by health issue, it's going to take a very unique individual, someone with congestive heart failure, urinary problems, dialysis-whatever. If they have a number of identifiable health issues, then you're obviously going to be able to pick that person out of the system without any difficulty, but those people are obviously a minority.

In looking at an individual patient, we can't really see where you're going to need to have any information on one specific person. Our association is already getting complaints. Cancer Care Ontario is one example where they actually called up a woman who had breast cancer and knew her name, knew exactly what happened, treatment, and were calling her regarding research purposes without her consent that the information even be released.

Mrs McLeod: That's interesting. I was going to ask you what kinds of concerns your members have been encountering in terms of privacy and that's a good example of it.

You seem to suggest that you would be more comfortable with the privacy protection of an electronic record. Is that a fair read from your brief?

Ms Young Evans: Yes.

Mrs McLeod: Do you not have concerns about the ability of people to access electronic records in ways that are still mysterious to me but that seem to happen on a frequent enough basis that they've become the stuff of legend already?

Ms Young Evans: Where there's a will, there's a way. I could relate horror stories back to you, stories that we've had where you've got clerical staff who are filing boxes of patient information and having a good old chin wag and a coffee down in the basement and reading them as they file them away.

So again, when it comes to electronic charting, you can see at least it eliminates that kind of very easy access to patient records. At least you know who is accessing it and when and what is the particular reason that you're accessing it. If the patient is not up at 3 o'clock in the morning, why did you go into their file? There was no need for that.

Mrs McLeod: Do you think Bill 159, as drafted, would protect against that kind of example, because the people handling those files, say, in a hospital setting, would be bound by the same rules around disclosure as the health care custodian who is the employer?

Ms Young Evans: But they already are, really.

Mrs McLeod: And it still happens.

Ms Young Evans: It still happens. As soon as you work in a health care setting, whether it be a hospital, a long-term-care facility or out in the community, patient information is confidential.

Mrs McLeod: That's one of the things we're struggling with, because we've had a number of the colleges come forward and talk to us about the inconsistency between this legislation and their own. Of course, they already have codes for handling, but when it happens, it happens, and the penalties under the HPRAC legislation don't seem to be more or less effective than the penalties under this may be.

Ms Young Evans: But you also have to find them, I guess, abusing the confidentiality codes as well. The one issue I indicated to you, it was only because one of the staff walked downstairs because she wanted to look up a file. She made some comment about, "Oh, having a good time reading?" "Oh, no, we're filing," and quickly everything was hustled and they started putting things away. But that obviously was a common practice in that particular location.

The Chair: Thank you very much for coming before us here this afternoon. We appreciate your presentation.

Recognizing that we have a cancellation for the next spot, Ms Lankin has asked if the committee could take a 10-minute recess. Seeing no opposition to that, the committee stands recessed for 10 minutes.

The committee recessed from 1608 to 1621.

FEDERATION OF HEALTH REGULATORY COLLEGES OF ONTARIO

The Chair: I'll call the committee back to order.

We'll proceed with our next deputation, from the Federation of Health Regulatory Colleges of Ontario. Good afternoon, gentlemen. Welcome to the committee. We have 20 minutes for you to divide as you see fit between either presentation or question-and-answer period.

Mr Jaro Wojcicky: Good afternoon, Mr Chair and members of the standing committee. My name is Jaro Wojcicky and I'm the president of the Federation of Health Regulatory Colleges of Ontario.

The federation is composed of 21 regulatory colleges that govern Ontario's health professions. Almost 200,000 health practitioners are regulated by these colleges. The colleges are not educational institutions. They are regulatory agencies created under the Regulated Health Professions Act.

I'm also the registrar for the College of Denturists. With me today are Rod Hamilton, director of policy and communications from the College of Physiotherapists of Ontario, and Richard Steinecke, legal counsel, who will attempt to answer any legal or technical questions you may have. Also in the audience are a number of the regulatory colleges representatives with us today.

The federation is pleased to have this opportunity to make a presentation to the standing committee on this very important bill. We have three primary submissions that we wish to make to you today.

(1) Colleges are not suitable health information custodians.

(2) The bill's protections for quality assurance information should also apply to the colleges' quality assurance programs.

(3) The consent provisions for youth under 16 years of age should be reconsidered.

Colleges are not suitable health information custodians. The federation is extremely concerned that the bill characterizes health colleges as personal health custodians. This concern is based upon two main considerations. First, appropriate access and use protections for patient health information already exist in the Regulated Health Professions Act, our governing statute. However, many of the provisions in the bill are given priority over the Regulated Health Professions Act.

The federation is concerned that unless the Regulated Health Professions Act provisions have priority over the bill, the colleges' ability to act in the public interest will be diminished. The colleges' statutory obligation to regulate their members in the public interest requires that access and use of patient health information be governed by statutory provisions specifically devised for this purpose.

Second, the application of the bill's provisions on the colleges would be inconsistent with policy decisions that have already been made in the bill. The bill makes special provisions to ensure that most non-police agencies can obtain and use health information in investigations and proceedings and for quality-of-care purposes. Thus it is apparent that unintended barriers to such use by colleges under the Regulated Health Professions Act are not intended.

Let me give you an example. A group practice realizes within weeks that a new colleague they have hired from another province, Mr Green, is grossly incompetent. They fire Mr Green. Mr Green's lawyer threatens legal action. A deal is negotiated that Mr Green will leave quietly so long as an innocuous letter of reference is provided by the group and so long as no mandatory report is made to Mr Green's college under the Regulated Health Professions Act. The group's lawyer advises that since the college is covered by the bill, the mandatory reporting requirements are now discretionary by virtue of subsection 11(2) and clause 36(1)(b) of the bill. No mandatory report is made. Mr Green goes on to solo practice where he injures a number of patients before the college learns about him. This example illustrates why colleges should not be treated as custodians in the same way that health practitioners are.

The bill's protections for quality assurance information should apply to the colleges' quality assurance programs. The federation commends the government for recognizing the need to provide protections for information used in improving the quality of health care. We believe these provisions will assist the organizations covered by them to develop and expand programs that will improve the quality of health care provided in Ontario. However, these protections do not apply to colleges. The federation would like clarification as to why the colleges' quality improvement programs have not been provided with the same protection. In order to gain members' candid participation in the colleges' quality-of-care programs, their quality assurance information must be provided with the same protections.

Let me give you another example. A practitioner completes a self-evaluation portfolio identifying a problem she has had with a particular patient. The practitioner candidly records the deficiencies in her skills that resulted in the problem and develops a plan for ensuring that a similar problem does not occur in the future. The college then requires the practitioner to submit the portfolio to the quality assurance committee for review. The committee commends the practitioner for her candidness and for her plan and suggests some additional measures that may assist her in this area. The original patient sues the practitioner for damages and requests that the court order the college to produce a copy of the portfolio for pre-trial discovery purposes. The college resists the request based on the damage it would do to the quality assurance process. The patient argues that the existing provisions under the Regulated Health Professions Act do not expressly protect these documents from production and therefore they ought to be produced.

Our suggested amendment is that section 40 of the bill should be amended so that colleges' quality assurance committees are included in the definition of "committee."

The consent provisions for youth under 16 years of age should be reconsidered. The federation supports the bill's use of many of the consent principles codified by the government's Health Care Consent Act. However, the federation's members are gravely concerned that the bill departs from these principles in two key areas: (1) its use of the chronological age of 16 years as a factor in assessing a patient's competency and (2) the lack of protection given to the confidentiality of children's health information when the information does not relate to treatments within the meaning of the Health Care Consent Act.

Young people are no different from other health care consumers. All health care consumers need to be comfortable that information given in confidence to their health care provider will remain confidential. Patients need to be confident that their health care professionals will do their utmost to maintain the confidentiality of their information. Only if this assurance exists will patients provide the full information on symptoms, lifestyles and habits that health professionals need to make informed assessments and treatment recommendations.

Our suggested amendment is that to address these concerns sections 46 and 56 of the bill should be amended to comply with the approach taken in the Health Care Consent Act so that competent patients can have privacy over their own records.

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In conclusion, to review the main points, the public will not be served well by making regulated health colleges custodians of patient charts. These charts are not created by the colleges and are used only as evidence. The protection in the bill for quality improvement activities ought to apply to colleges' quality assurance programs as well. The consent provisions for youth under 16 years of age should be consistent with the scheme set out in the Health Care Consent Act.

There are additional points, some of which are more technical in nature, contained in our written submission. For example, we are concerned that making the bill paramount over our enabling statute, the Regulated Health Professions Act, may jeopardize our ability to obtain key evidence for investigations into misconduct or incompetence. The definition of "proceeding" in the bill may interfere with our investigations as well.

Outside access to college investigative files may defeat some very crucial investigations, particularly those related to fraudulent billing or narcotics peddling.

We would ask you to review our submission on these points. On behalf of the federation, I thank the committee for your time, and if you have any questions of us now-

The Chair: Thank you very much. That does leave us about three minutes per caucus. We'll start this round with the government.

Mr Wood: That was a very clear and helpful submission. We have no questions. Thank you very much.

Mrs McLeod: It seems that it doesn't matter how much time we spend on technical briefings on this bill, there's always something we've missed. I'm not aware of this issue around mandatory reporting, and I wonder if you could just explain to me a little bit more about your concerns with the fact that the current requirement for mandatory reporting is removed by Bill 159.

Mr Richard Steinecke: In our regulating statute, the Regulated Health Professions Act, which is our enabling statute, a practitioner or an employer of a practitioner must mandatorily report certain things. For instance, he must mandatorily report reasonable grounds of sexual abuse of a patient; he must mandatorily report, in confidence, professional misconduct or incapacity if it leads to suspension or firing of the employee or the colleague or dissolving of the partnership. Those have to be made on a mandatory basis. The concern is that since this bill overrides all other provisions, someone could say that we no longer have to make this mandatory report; under section 36 of the bill everything is discretionary. The employer or colleague "may" report, and so may choose not to, harming the public and putting them at risk because we don't know what's going on.

Mrs McLeod: I appreciate that clarification because I realized it was the permissiveness that was the concern, but I hadn't really understood that that potentially could override the mandatory reporting in those areas.

We've heard a lot today about the inconsistency between Bill 159 and the regulatory codes that the colleges are working under. I guess the bottom-line question comes down to, do we need Bill 159 in order to protect the privacy of patient records, or in your view does the HPRAC legislation respond adequately to the need for protection in terms of health care practitioners?

Mr Steinecke: We can't comment in general as to the benefits of the bill outside of our area, but we believe that as far as the regulated health profession colleges are concerned there is no need for the bill, that our legislation is specific, it covers our unique situation well and it doesn't create problems. So as far as we're concerned we believe that the colleges should not need to be covered, that they should be exempt in some form or another. Whether the bill is needed for other purposes, for example for practitioners, I think it's not really for us to comment.

Mrs McLeod: But there could be a difference then between the standard of privacy protection carried out by a practitioner and the standard required by the college? I would have thought those two things should be synonymous for all of the health practitioners that are regulated.

Mr Steinecke: I think there is actually a significant difference. The practitioner is a gatherer of the information and uses it for treatment. The college does not gather, does not create the information itself; it simply uses the information that is created by others as evidence for its regulatory processes. That really puts us in a very different category, and it puts us in very unique situations in terms of, for instance, the need for information perhaps without consent. In order to do our jobs we would have a need for that that practitioners don't have.

Mrs McLeod: If we have Bill 159 and the colleges are exempt, which takes us back to the original recommendation read this morning, would that not put practitioners in the position of working under two very different sets of rules regarding privacy and the collection, disclosure and protection of information?

Mr Steinecke: If the colleges were exempt, it wouldn't directly affect practitioners at all. They would still be covered by the bill or whatever replaces it. The colleges, however, are the ones that could end up with two separate regulatory rules, because the Regulated Health Professions Act does not directly set rules for practitioners. It only does this indirectly through what is professional misconduct. But it directly governs the colleges' handling of the information. So to put us under the bill without proper accommodation would put us under two sets of rules. The same would not necessarily apply to practitioners, because they would be governed by the bill and not directly through the legislation itself.

Ms Lankin: I appreciate the examples you have provided to us. All the colleges so far, and you as a federation, have indicated that you think the provisions under the Regulated Health Professions Act should have primacy over the Personal Health Information Privacy Act. I have a concern with blanket exemptions. I would like to see issue by issue spelled out, and where it's necessary to have the exemption, build that into the legislation around that particular exemption. Perhaps that's a challenge to go back-you've identified some and there may be others-and provide the committee with that.

But let me ask you, following on Ms McLeod's question around mandatory reporting: you specifically said that subsection 11(2) and clause 36(1)(b) are discretionary and that provides a problem. Could you tell us how you see those sections providing discretion that would interfere with the mandatory reporting provisions?

Mr Steinecke: Section 11 says this legislation supersedes or is paramount over any other legislation with respect to confidentiality. To the extent that our legislation was in conflict, it would be overridden. Section 36 says that a practitioner or a health care custodian of any sort may disclose information to a college pursuing its mandate under the Regulated Health Professions Act. Our concern is that a court would interpret that "may" as saying you don't have to unless you want to. The provision in the Regulated Health Professions Act that says you must report sexual abuse, for instance, is now overridden. You don't have to do it unless you want to. Of course the whole purpose of making it mandatory was so that people couldn't decide to withhold the information for whatever reason, whether it be a very legitimate reason but misguided, or whether it be some sort of deal so that their problems would go away but the public would still be at risk.

Ms Lankin: So if that language in a section like that was amended to bring it in line with the RHPA provision, if this committee and the government felt that was appropriate, that would be satisfactory, and if we addressed all the other concerns, as opposed to a blanket supremacy clause for your legislation?

Mr Steinecke: Yes. It would be possible to deal with it throughout the legislation. The problem is that the two pieces of legislation are so detailed and so complex that we don't think it can be done. We think the only approach that would really capture all the unforeseen, unintended consequences would be to allow the Regulated Health Professions Act to be the scheme that applies to colleges in most circumstances.

Ms Lankin: Currently, as the bill is proposed naming colleges health information custodians, people you release that information to then become recipients under this legislation. So, for example, there is an obligation on experts if you have them review files. What is currently within the RHPA scheme that protects information that you share with other third parties?

Mr Steinecke: The secrecy and confidentiality provision in the Regulated Health Professions Act is quite broad, and it really does address this. It's not only the colleges; anyone who receives it-for instance, experts, lawyers, whatever-is then governed that they must keep it secret as well. So the recipients are dealt with very comprehensively.

Ms Lankin: Would it be parallel to the obligations on recipients under Bill 159?

Mr Steinecke: I would say it's analogous. They basically cannot release it to anybody except for an RHPA purpose. So an expert couldn't tell anyone else, but they could use it when they testify at a discipline hearing, for instance.

The Chair: Thank you, gentlemen, for your presentation before us here this afternoon.

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BOB FRANKFORD

The Chair: We've done some realignment of the agenda to fill the vacancy at 5 o'clock. Our next presentation will be Dr Bob Frankford. Bob, good to see you again. Welcome back to committee and to Queen's Park. We appreciate your accommodating our vacancy.

Dr Bob Frankford: I appreciate being able to come and contribute to this discussion of Bill 159. I am here as an individual, and I want to mention some affiliations and experience that make me qualified to speak on the topic of health information and privacy. I qualified as a doctor in England and have spent over 30 years in the medical field in Ontario. I've spent the largest part of my career as a general practitioner in Scarborough and east-end Toronto. More recently, I spent over three years as attending physician at Seaton House, the largest shelter for homeless men in Canada. This is a distinctive setting, with a high turnover of patients suffering from a wide variety of mental and physical health problems. It certainly would have been helpful, in that setting, to have ready access to individuals' medical records; for example, for maintaining recommended prescriptions for psychiatric disorders or infectious diseases.

I am also currently a board member and vice-chair of a supportive housing agency for individuals with mental health conditions called Bayview Community Services, which is situated in the north of the city. I am not here directly on their behalf, but was able at a recent board meeting to discuss aspects of this bill, and I would certainly like to make the committee aware of some of the concerns raised by staff and clients there. This agency and others in the field of community health stress the importance of long-term trust in the relationships with their clients and feel that, if passed, the bill could be quite harmful to the often fragile stability they have been able to create for their clients.

It's a complex bill with many details. I certainly have not read it page by page, but if some observations I make are helpful, that's what I would like to do now. This bill would impact all individuals in the province and a huge range of health providers: individual practitioners, institutions and organizations. The basic premise of this bill should be, "Does it advance health care delivery?" To remind you, at any time we presumably are dealing with the health and records of some 10 million people. This means the number of records, let alone items of information, must be multiplied many times, given the multiplicity of ways in which care may be received.

I looked with interest at the Hansard of this committee. I see the extensive contributions of Ms Cavoukian, the Ontario privacy commissioner, and Mr Radwanski, her federal counterpart. Mr Radwanski's submission seemed particularly forceful and critical of the bill. I was impressed by his understanding of the issues and his questioning of how much the management of health systems requires access to personal information. The example he talked about, of studying appendectomies done within a hospital, was a good one.

One of the general principles of the bill states that, to the extent possible, individual identifiers should be removed or concealed. I don't believe anonymization is a drawback to effective planning or research, In fact, it can be argued that anonymization is actually beneficial.

In introducing the bill, Minister Witmer stated it was a necessary step in the introduction of primary care reform. So far as I can see, this connection hasn't been followed up very much in subsequent debates I have read, and I frankly do not see it as being fundamental to primary care reform, of which I think some type is certainly long overdue. It's something I have wanted to work on for many years. Unified, lifelong medical records with rights of patient access could well be beneficial and may be how we bring health care into the electronic age, but I think that needs to be planned in detail before legislation is introduced.

I'd like to raise questions about what constitutes health information. You may be aware of the debates that have raged about what to include in diagnostic categories. I'm thinking, for instance, of the DSM classification of psychiatric conditions put out by the American Psychiatric Association, which I think is the standard for psychiatric diagnosis. Until fairly recently, homosexuality was listed as a diagnostic category, which led to considerable controversy. Was it health information then? Is it now?

I fully appreciate the importance of comprehensive and transferable health information for patient care. A career in general practice means that individuals you saw as babies come asking to know their immunization records in order to work in their own children's day cares. I was pleased to see there was discussion in the committee about the transfer of medical information into jails for the treatment of inmates. My experience at Seaton House more often involved the reverse, of requesting the transfer of information out.

Obviously there are issues of consent and privacy, which warrant considerable discussion of individual versus group rights. However, I suggest this is something that can and should be dealt with in relation to existing practices within and between health professions. The minister and ministry of corrections certainly need aggregate data about their populations, but even so I think inmates are entitled to the general rights of all.

On one specific area in the bill, I find the limited ability for individuals to change their records quite strange and self-defeating. Surely planning and other purposes seen in the bill require accurate information. Apparently, even the finding of fraud in a court of law only allows the filing of a record of objection.

In conclusion, I believe there is a need for the transfer of useful information to ensure effective health care for individuals and to do research and planning. The potential for using currently available data is far from being realized. Epidemiology and population-based approaches are needed, but to a large degree I believe the data can be made anonymous. I won't comment on the relationship of the proposed Ontario legislation with federal legislation, though it would seem that working this out may be the first priority.

Finally, I would like to return to the basic question about this and any other health legislation. Does it advance health care delivery?

The Chair: Thank you very much, Doctor. You've left us time for a question from one caucus, and this time the rotation will start with the Liberals.

Mrs McLeod: You're absolutely right that the legislation, when it was introduced, was seen to be something that was necessary to move into primary care reform, and yet in the presentations we've had and the technical briefing we've had, I'm not sure that's really been a focus.

My sense of the issue, though, is that it's a question of coordination of care. If an integral part of primary care reform is to have coordinated health care between the various providers, there needs to be an ability to exchange information fairly freely between those providers.

I guess my question would be, in your view is it possible to move ahead with that kind of coordinated care across the current providers-hospitals, physicians' offices, the long-term-care setting, the community health setting-and have that information available as it's needed and still not open legislation as broadly as this bill appears to do?

Dr Frankford: I think we have to look at what is the system now. I think it's slow, paper-based, has many institutions and all sorts of either legislated or customary requirements about transferring records which I think are far from satisfactory, but it's there. I think we certainly could be moving gradually to make it more electronic, and I think some things are really very fundamental now.

I would like to take this opportunity of mentioning something I have mentioned in forums before, which is universal primary care registration. We know the minister is or has been in the UK, and it is fundamental to the National Health Service that everyone is registered with a GP or health centre or something. I feel this is really basic to making it universal. To start with the electronic records is very nice, but I think it's going to take a long time coming and I don't think it's the base from which primary health care starts.

The Chair: Thank you, Mrs McLeod. Good to see you again, Doctor, and thank you for taking the time to make a presentation before us today.

Ms Lankin: Mr. Chair, is it possible to make copies of the notes Dr Frankford had and have them circulated to the committee?

The Chair: I'll certainly ask the clerk, if he's prepared to share those with us.

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ONTARIO COLLEGE OF PHARMACISTS

The Chair: Our next presentation will be from the Ontario College of Pharmacists. Good afternoon and welcome to the committee.

Ms Tina Langlois: Good afternoon. My name is Tina Langlois. I'm the manager of legal services and patient-relation programs at the College of Pharmacists. Sitting with me is Deanna Laws, the registrar of the Ontario College of Pharmacists and herself a pharmacist.

We want to thank you for the opportunity to provide you with our comments on this piece of legislation. We've done so in writing, and we will not be filing any additional written information. We simply want to emphasize a few points and perhaps give you our unique perspective from pharmacy.

I think the first thing we need to state as a college is that we very much support the goals of this legislation. We feel it's important that personal health information is collected, used and disclosed in an appropriate fashion that protects the confidentiality of the information for the patients. We also want to advise you that we concur in the submissions of the federation, and we won't be repeating them because I think they've covered them in quite a fulsome way.

Again, a little bit of our own perspective from the world of pharmacy. Pharmacists practise in an information-rich and technologically driven environment. They have been keeping computerized records for many, many years. Electronic transmission and storage of these records is nothing new in pharmacy. Pharmacists have been transmitting electronic information to insurers-in fact, to Ontario drug benefit-for quite some time. I believe it's actually a requirement of Ontario drug benefit that pharmacists transmit that information electronically. So the electronic and computer world is nothing new to the world of pharmacy. The other thing you need to know in terms of our information-rich environment is that millions and millions of prescriptions are filled annually in Ontario, and each of those prescriptions creates an individual piece of personal health care information which is then required to be stored and dealt with by our members.

Our members have always displayed a high standard of professionalism as it relates to confidentiality. To let you know why that is or where they get the guidance for that, we have a principle in our code of ethics that deals with the concept of confidentiality of patient records. If I could, I'd like to read it to you so that you understand the environment in which pharmacists practice:

"The pharmacist preserves the confidentiality of information about individual patients acquired in the course of his or her professional practice and does not divulge this information except where authorized by the patient or required by law. Pharmacists protect their patients by serving them in a private and confidential manner. Pharmacists do not divulge information that identifies the patient; except in instances where there is a compelling need, in the pharmacist's professional judgment, to share information in order to protect the patient or another person from harm or where authorized by the patient or required by law."

That is the extent of the information in our legislation, standards or codes that deals with confidentiality. While that may seem like it's not a great deal, it has allowed pharmacists to practise very professionally with very few complaints in this area to date. In fact, complaints regarding the manner in which confidentiality of patient information has been dealt with by our members represent less than 0.03% of complaints received in the last five years.

We as a college are confident that our members will continue to preserve the confidentiality of patient health information and deal with it appropriately because they have this obligation under the code of ethics, regardless of whether this legislation should apply to them. The other thing we want to clarify is that we do think it should apply to pharmacists. They are health care professionals and, as such, should be covered by this legislation.

We come to you to ask that you consider not including colleges-ourselves as a college-as custodians under the act. A couple of reasons for this: firstly, we don't think we need to be included as custodians under the act in order to protect the public in this regard, in order to preserve the confidentiality of their records. Further, we are concerned that there may be problems that manifest themselves with regard to our investigations and conflicting legislation and potential court challenges, should we in fact be included in this act.

A little bit about who we are and what we do at the college, now that I've told you about our members and the environment in which they practise. The college's mission is to regulate the practice of pharmacy, through the participation of the public and the profession, in accordance with standards of practice which ensure that pharmacists provide the public with quality pharmaceutical service and care.

The personal health care information that is gathered by the college is done so in the course of performing this mission and in the course of regulating pharmacists and the practice of pharmacy in the public interest. We are generally seeking to gather personal health information where we have either received a complaint from a member of the public or where the college is initiating an investigation due to its concern for public safety. That is the context in which we would be collecting personal health information.

As you have heard no doubt from other colleges and from the federation, the college is governed by section 36 of the Regulated Health Professions Act, which provides extensive confidentiality safeguards for any information that comes to the college's attention, be it personal health care information or other information, for that matter. I can assure you that with a $25,000 penalty, those of us who work in these areas at the college are extremely cautious in the way we deal with the information. We keep computerized records of what information we gather and where we store it. We also log receipt of it and return the originals to the source upon completion of our investigation. That is not done because of this particular piece of legislation but rather in keeping with general good practices for investigations that may well lead to litigation. There is a need to preserve the evidence and to make sure that you keep a handle on it. So we do it because we need to currently.

We're not aware of any complaints or concerns that have been expressed about the way in which the college has handled personal health care information from members of the public of Ontario. The concerns that we have if the college is defined as a custodian within the act are outlined in our submission. Just to review them again, we are concerned that our inclusion in the act may impact our ability to investigate, particularly where the patient involved may in fact be involved in the offence in question. I turn your attention to perhaps the issue of insurance fraud, where somebody is getting prescriptions run through a pharmacy or getting prescriptions from a doctor and in fact the patient is the one who is benefiting by being reimbursed by their insurer. It's obviously in their interest not to co-operate with us or provide their consent to get those records.

Our concern is that we may find ourselves-and it is speculative in nature and I will grant this, that we don't know this is what will happen in the future. It is indeed a concern. Our concern is that we will end up in court, challenged by members and challenged by patients and spending valuable college resources that are better directed at regulating the profession in the public interest. These kinds of court challenges take a very long time and eat up a lot of resources, so our concern is there.

Conflicting legislation always causes problems until it is sorted out, and that takes time. Our request of you is that you allow this time for these things to filter through this particular piece of legislation, but in the interim you have faith in the provisions of the Regulated Health Professions Act as they relate to the colleges and allow that act to take primacy over this. Any changes or concerns that may manifest themselves in the fullness of time as this legislation is applied to members, and as we hear from the commissioner about what particular complaints or concerns are expressed, we feel can adequately be dealt with by amending the Regulated Health Professions Act. Again, the colleges have many challenges. Certainly, we would not look forward to adding another piece of legislation that potentially conflicts to our level of challenges.

The options you have available to you: I guess the first option is to, again, simply have faith in the fact that the Regulated Health Professions Act, which is a fairly recently drafted piece of legislation that is currently under a very extensive review, should be the primary piece of legislation that deals with colleges, that it deals adequately with the issue of confidentiality of patient records and that there is really no pressing public need to include colleges as custodians at this time.

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The other thing that I would just like to bring to your attention is the fact that as recipients of this information from custodians, because we believe that our members should be custodians, if we receive the information from our members in this way, then obviously we would be covered by the provisions of the act that deal with recipients of the information. Again, were we not covered by the RHPA and those very strict confidentiality provisions, I think the pieces of the legislation found in section 24 that deal with how a recipient of information has to act or behave would adequately also protect the public from any concerns they might have around the release of this information inappropriately.

I hope that we've been able to help you at least understand the environment in which our members practise and the concerns that our college has. We would urge you to consider not including colleges in the definition of custodians of personal health care information.

The Chair: That leaves us just under three minutes per caucus for questioning. This time we'll start with the NDP.

Ms Lankin: I actually don't have any questions. I have a request to make, following this and the other colleges' presentations, first of all, to legislative research, if we could have an analysis provided of the privacy protections under the RHPA and if it's obvious where there are any differences between that and the Personal Health Information Privacy Act, and secondly, if we could ask the ministry if they would determine whether or not the HPRAC review, which we understand is just about over-

Ms Langlois: I believe so.

Ms Lankin: -and long-awaited, and we don't want to hold it up. But is there any capacity for HPRAC, even secondary to the main review, on a separate issue, to take a look at this and provide either any recommendations they may have if there are required amendments to the RHPA or if they have any recommendations with respect to this issue of primacy. That might be helpful.

Mr Spina: Thanks for the presentation. You were fairly concise-and we all appreciated it-in distinguishing between who was the actual custodian of the data in the case of the pharmacists themselves versus the college and therefore you felt that the current legislation would cover your status as a college in accessing information in the course of an investigation as a result of a complaint.

Ms Langlois: What I was saying was that if the college is not included as a custodian but in fact they receive their information from one, then those sections apply, which I believe provide certain parameters around how a recipient can behave.

Mr Spina: Do you practise any mechanism of anonymity when you do the investigation where you are accessing patient data? Are you dealing with a number or are you dealing with a name and address and so forth?

Ms Langlois: We are dealing firstly with a number. Prescriptions have numbers on them and oftentimes the data is indeed presented in that fashion because there's no need to identify any patients. There is a prescription number, a drug dispensed and an amount paid, and the patient's name is really not relevant at all. It is revealed, however, when we're trying to determine whether or not a prescription was authorized, for instance. If we contact a doctor and we want to know if the doctor has prescribed a certain thing for a patient, we need obviously to provide that physician with the information in order that he or she could either confirm or deny that they have in fact prescribed it.

Mr Spina: You would also probably identify the difference between someone who's under the DBF or someone who would be paying under their own insurance plan.

Ms Langlois: We don't. However, the insurers certainly do. Most of us who are covered by a drug plan have already signed away many of our confidentiality rights anyway, because the person who pays for our drugs has permission to review the information in question. But we at the college certainly don't deal with the information any differently. We would still get it from the pharmacy because the actual hard copy records are there.

Mr Spina: Do you collect any data other than in the course of investigation from the perspective of analysis of usage or comparative data, market research data, any of that sort of information either among the various pharmacists or classes of pharmacies etc?

Ms Langlois: We don't collect that kind of information. However, there are groups that do. IMS, I believe, is the most notable example of a group that collects data about drugs dispensed and prescribing habits etc. The college's standards and documents that were written around that specifically state that no identifying patient information can be released with that, so it can only be dealt with in a statistical fashion.

Mr Spina: That's IMS's practice, or yours?

Ms Langlois: That's the college's standard on its members, so if you as a member are going to release information to someone, you have to ensure for yourself that they are using it for a purpose that is appropriate and that there is no identifying information-forget name, include also address etc-in the information you are providing.

Mr Spina: It's not entirely fair of me to ask this next question, but you don't have any idea whether IMS practises anonymity or not? They say they do.

Ms Langlois: The data they receive are anonymous. They can only reveal what we reveal to them, and since they only get anonymous data, then what they get is cumulative.

The Chair: We'll move to the Liberal caucus. Mrs Pupatello.

Mrs Pupatello: In short, the college needs to be separate from Bill 159 so that you have greater powers of investigation to fulfil your mandate.

It is my understanding that the pharmacists would like to have greater access because it helps them do their job better.

Ms Langlois: Sure.

Mrs Pupatello: As a pharmacist, they want to see that there aren't other medications out there that are going to conflict etc, or they could develop patterns of overuse or whatever all those things are. So the pharmacists like the idea of being able to see more of the information around the patient.

Ms Langlois: Absolutely. I think you will see that they are even looking to ensure that they can have access to diagnoses and things like that which perhaps aren't traditionally given to them because, again, it will help them do their job.

Mrs Pupatello: If you had to choose in terms of standards, is Bill 159 considered to have higher or lower standards that you should be subject to? One would replace the other. In this case, you would be superseded by 159, which actually hampers your authority to do your job.

Ms Langlois: I guess my position is different with regard to us versus our members. Our members right now are governed by a code of ethics around confidentiality and this bill is a higher standard because it is more specific and it is more detailed in the way in which they have to deal with things. As I read to you, our code of ethics is a very general and overarching statement of guiding principles. As it relates to the college, though, I think our confidentiality provisions in the RHPA, at least the way I have always read them, are very strict and they impose a very high level of confidentiality. I'm not sure that I would think that this particular bill would impose any higher level of confidentiality on the college. It may just lead to confusion.

Mrs Pupatello: The idea of a lockbox being included in the legislation-if you followed, it had been in originally and now it's out. How would that change how you do your work?

Ms Langlois: I'm afraid I came to this piece of legislation after it had been removed so I'm not really familiar with the lockbox provisions of the act.

Mrs Pupatello: It's just the notion that there would be certain features that an individual could select to be put in the box and not allowed. I guess only in terms of that example you used for our colleague, if it's the patient you're actually investigating and not the pharmacist-

Ms Langlois: Sure. It's always the pharmacist we are investigating, but sometimes the pharmacist has the assistance of the patients or at least the concurrence of the patients in doing what they're doing. We would never investigate a patient, ever. That's not our job nor is it our intent.

Mrs Pupatello: But it comes as a result of this type of review that you would see this.

Ms Langlois: We would be investigating a pharmacist. Our concern would be if a patient was in collusion with the pharmacist. They could either lock away that information, if that's how a lockbox is to be used, or ask that it be varied or changed in some way. Because there's a financial benefit and incentive to them, frankly, in that limited scenario for them to do that, the college would be completely hampered in their ability to get to the bottom of that.

The Chair: Thank you very much for coming before us this afternoon. We appreciate your presentation.

RISA DEBER

The Chair: Our last presentation this afternoon is Professor Risa Deber. Thank you for accommodating our slightly altered agenda.

Dr Risa Deber: Thank you very much for inviting me. I'm speaking here not as a representative of any group at all; I'm speaking here as an academic.

I commend you and the drafters of the bill for the careful thought that's been devoted to this very difficult issue. What I want to talk about is the need to balance privacy issues and the critical importance of protecting the public against what I consider to be also the critical issue of making sure that valuable research can be conducted. I would urge caution in how the bill is amended with respect to access to information because some of the suggestions I've been hearing I think would interfere with things that people would want to have happen.

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In terms of who I am, I'm a professor in the department of health administration at the University of Toronto, which is in the faculty of medicine. I'm an active teacher and researcher but I specialize in health policy and medical decision-making. I'm not a lawyer, I'm not a privacy expert, I'm not an epidemiologist. In fact, most of my own research does not involve identifiable data, so in narrow terms, my research agenda is not likely to be personally affected by this bill. But I do sit on a lot of committees, including grant review committees for most of the major national granting bodies. I've sat on the Social Sciences and Humanities Research Council, the Medical Research Council and the National Health Research and Development Program. I've also sat on government task forces and committees, including a current one looking at genetic screening for adult-onset disease. I'm also on the ethics review committee for health services at the University of Toronto, which handles faculty medicine and other health services. I am also past-president of the Canadian Health Economics Research Association. I am not speaking on behalf of any of these bodies.

I am concerned that if we take too narrow a definition of privacy, I think we'll end up doing harm to research and to the public which relies on research. For example, I've heard comments that suggest that the only valid use of personal data is to advance the care of the individual whose data is being accessed. But our care depends on access to information from previous individuals. There is a famous quote from Isaac Newton saying, "If I have achieved anything at all in life it is because I have been able to stand on the shoulders of giants." Should we become unlucky enough to be ill, we expect to be able to benefit from research on previous patients. Similarly, if we want to access services, we expect that somebody, whether it be government, district health councils, hospitals or doctors, will be examining the performance of our system, making sure that the needed services we have are both available and of high quality and at reasonable cost, that we're not wasting.

Many people have pointed out that our health care system suffers from too little information and too little research, not too much. We don't know what we're spending. We don't know what the results are of the resources we are devoting to health care. We don't know what we're buying with them. We don't know what best practices are to guide and improve the performance of our system.

When I read some of the testimony that has come to the committee, with its stress on, "Let us control and limit data collection and use, let us prohibit gathering of data that is not required by law," I feel it would be very unfortunate, because we can't see the future clearly. Our track record in identifying beforehand precisely what information is going to be required is not very good. It's precisely because we don't have unified systems of care that it is often essential to be able to link data, not just to ensure an accurate depiction of the population, which was Dr Cavoukian's point-and I really appreciated her comments-but because any one data source is going to give you a partial and incomplete picture.

In many cases, from a practical point of view, obtaining consent is an inferior solution, not only because it is often very expensive and often infeasible, but because it can require a much greater invasion of privacy than simply linking and anonymizing files. If I'm not going to be identified, I'm not going to be contacted. I think it is far more invasive to have somebody call me up and say, "Can we put your record into our study?" than simply to put your record into the study and make absolutely sure there's no way of tracking it back to you or affecting what happens to you.

There's research I was doing with the HIV population in which I managed to convince our ethics committee that the only way I could endanger these people was to get their signed consent, because then I have names that could be leaked. If there was no signed consent but implied consent, then there was no possibility that anything could be leaked or they could be endangered. I think sometimes too narrow a legalistic view can endanger people more.

I thought you might find helpful a couple of examples of research that I think most people would want to have done but which the suggested approach to privacy and the requirement for prior consent could make impossible if we're not careful in how the bill is drafted. These are not hypothetical; these all come from examples I have seen and, in one case, from research I have been trying to do.

The first one is a women's health question. About a year ago I was approached by a young woman who was a cancer survivor and who was working with a breast cancer support group. She was receiving frequent requests from women with pre-menopausal, often aggressive disease. They wanted to know which of the alternative treatment approaches offered to them would maximize the likelihood that they could subsequently have children. She found remarkably little information available. So her support group, which was not well resourced, wanted to know whether they could contact people who had run clinical trials and see if they could contact the women who had been in the clinical trials and ask them about what the impact was on their subsequent fertility, depending on what sort of treatment they had received. Note that there is no way these women would have given prior consent to having their data put to a second use, because nobody had thought of doing this study. I was forced to tell her that no ethics committee I know of would approve this. But also I suspect, given the opportunity, almost every woman surviving cancer would be delighted to have this sort of research done. There's one example of which we will not be able to know because of requirements of consent.

The second is an issue about workplace hazards. This is a study that did come to our ethics committee in a province, not Ontario. They began to suspect workers in a particular plant might have been exposed to hazardous materials in the years prior to 1985, when they changed the process. This was supported by the union, the company, the province and the Workers' Compensation Board, because they wanted to know about things like should they be giving them workers' compensation, should they be concerned around occupational hazards.

What they wanted to do, and they had a budget of less than $15,000, was just take a list of everybody who worked in the plant before 1985, link the names to the provincial cancer registry, and see whether there was a higher cancer rate. Now, if you said no, you have to have consent, recognize, first, it's going to be far more intrusive to contact them. Secondly, there is a Catch-22, because if people have died, you can't get their consent. So precisely the people who were most likely to have been adversely affected were the people you would not be able to contact, because you couldn't get consent and because, as best I can read the bill, you certainly don't have proxy consent and you don't have proxy consent for dead people. Also, trying to locate where people in 1980 are now living is going to be a rather onerous thing. I can't see how it's better protection of privacy to set private detectives on you to locate where you are and get permission than to do a linkage.

There's another issue: it's not cheap to try to get consent this way. There's another study I know of that was trying to find out whether disabled workers were getting adequate payments. The entire study would cost $80,000. They estimated that just to try to get consent would cost an additional $120,000. This is in an environment where there's not that much research funding around. The latest CIHR competition funded less than a third of all applications and didn't fund them at particularly high levels.

Also note that these studies were very carefully designed. There could be no identifiable information released; there could be no possibility of harm coming to the individuals whose health information was being included. I think those sorts of provisions were critical. But I think in occupational health and safety studies, ignorance is not bliss. If you can't do research because of views of confidentiality, there's immediate harm to individuals who will continue to be exposed to hazardous situations. There are also people who are going to be denied benefits they should have received. So privacy becomes a shield for no accountability.

My third example is risk assessment. Several decades ago, a number of young women were diagnosed with a very rare form of cancer of the vagina or cervix called clear cell adenocarcinoma. They did case control studies in which they only looked at the women presenting with this condition, and they realized that the mothers of these women had taken a drug called DES during their pregnancies. This terrified these DES daughters, because they thought they were all going to die of this type of cancer. There were suggestions that you might do surgery, all kinds of rather unpleasant things, cauterization, very painful.

Fortunately, they were able to go back and take a larger cohort of the daughters and find that although there was a higher relative risk, there was a very low actual risk. Fewer than one in 1,000 of the DES daughters would actually develop this cancer. As a DES daughter myself, I was rather pleased that they went back and did this research.

But as a sidebar, subsequent research into DES has been really hampered. Because we control and limit the data collection, nobody knows who had it. So the US National Cancer Institute says, "Between five million and 10 million people"-which is a rather wide range-"were exposed to DES during pregnancy," and many of them don't even know they were exposed. Here is a situation where even though there are emerging health issues, you can't even find them.

I think genetic testing is an analogous situation. We're very worried about what this will do to people who are told that they have problematic genes, but a whole lot of the genes we find are what they call propensity genes. These indicate that there's a higher risk for conditions such as heart disease or Alzheimer, but we don't really know it, because all we've got is case control studies. We know that somebody with heart disease is more likely to have the gene, but we have no idea about how likely people who have the gene are to have heart disease. So we have a situation where these propensity genes may not indicate high risk at all.

We're on the verge of spending enormous amounts of money, both public and private-the private will come from employers and will be a burden on payroll and a burden on our economy-for genetic tests that have very serious potential consequences to people who test positive, and we don't know if the results are going to be useful. I really hope we can figure out some way to store genetic samples, very, very carefully protecting who's going to get access and how it can be used; but some way of seeing, "OK, if I really have this supposed heart disease gene, how likely am I to get heart disease and how does that compare to the rest of the population?"

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Getting a false positive is not benign. There's a real psychological impact of being told you're at risk for a serious or life-threatening condition. Additional tests are painful, dangerous and expensive. Here again, if we're ignorant, we're going to enrich the providers of tests, but I don't think we're going to do much for the people who pay for care or for the public.

The final example is a self-serving one, which is my own research, because for the first and certainly last time, I tried to work with administrative data to find out whether setting up regional health authorities, which they've done everywhere except Ontario, affected people's access to specialized care outside their region. The Canadian Institute for Health Information-CIHI-keeps some of these data, not all of them; they still don't know much about outpatient or community-based services.

So we identified some tracer conditions and we didn't need personal information. We weren't going to say that this is what happens to Mrs Smith. We weren't even going to say this is what happens to Peterborough. But we had to be able to link to see if Mrs Smith in Peterborough was being treated in Peterborough or was being treated outside of Peterborough. We could not get those data. We have been fighting for two years to get access to that level of data. Finally, the only way we're able to do it is it's going to be done in-house by CIHI. We couldn't even get that level of linkage, because, among other things, it appears that hospitals are considered people and they have privacy rights too. Even though we weren't going to release identifiable information, we couldn't get it to do the analysis.

I have a graduate student who is trying to see whether repatriation of care from pediatric hospitals would affect their viability. She had to go to each pediatric hospital to get written permission for them to tell her how many cases they were doing and what sort of care. Another student was trying to look at laboratory services. Again, she could not get information. So we have already massive difficulties in monitoring the performance of our system in terms of restrictions on access to data.

I would like to know what an appropriate payment would be if we wanted to move to rostered, capitated delivery systems. We can't get that. I would like to know what the impact is for private insurers and business of shifting care to the community. We can't get that. If we're going to make wise policy, I think it's important to leave some ability to do this.

The legislation gives power to official government agencies, but we'd like to have some way to allow external scrutiny of performance, whether it be from patient organizations or academics, as long as there are careful protections put in place so that you're not going to be identifying or harming individuals. The law, as it stands, will make that very difficult. The amendments I've heard suggested will make it impossible.

With the recognition I am not a legal draftsperson, there are a couple of principles I'm being sort of brazen enough to suggest. The first is I think it's important to clarify how academic researchers can get access, with appropriate safeguards, to linked data at a reasonable cost. There have been health economics meetings in which Canadians were doing their analysis on American data because they could get the American data at cost for the CD, and the Canadian data, if they could get them, would be $20,000. I don't think it helps us not to be able to see what Canadian data tell us around how to better improve our system, and I don't think most academics will qualify as health information data custodians under the terms of the act. So whatever we're doing, how can that academic get hold of these?

Second, I would not unreasonably limit the collection of data, particularly since history suggests we can't always foresee what research questions are going to be pressing. I think we do need to make sure whatever data we collect can't be misused.

Third, consent is desirable, yes, but it's not always feasible, particularly for retrospective studies. I would hope that we could avoid a blanket requirement for prior consent, particularly if we're going to be anonymizing data and it will not personally affect the population in the study, and when trying to get consent, it's going to be more intrusive than careful controls on access to the personally identified information.

Fourth, we probably have to have some ability to have substitute consent, prior consent, you know, blanket consent, because if researchers don't need to track all potential subjects, I think we're going to have more privacy, not less.

Fifth, I think we've got to recognize there are valid uses of personal data for purposes that go beyond the care of that individual at that point in time.

I'd like to thank this committee for their kind attention. As Mr Sharpe noted at the beginning, there are competing interests, and balancing them is difficult, but I am not seeing the public who would benefit from research-and be harmed by ignorance-testifying in front of you. So what I am trusting and expecting is that you, as their representatives, are going to continue to take their interests to heart.

The Chair: Thank you very much, Professor. As I'm sure the committee has noted, it has allowed you to go well over time. But seeing we'd had a couple of cancellations at the end of the day I thought that was quite acceptable.

Mrs Pupatello: Chair, do we have time for a quick question?

The Chair: Well, only in fairness to all of the other presenters who will be limited to 10 minutes, perhaps you could ask it off-line to the professor after we adjourn.

Thank you very much, Professor, for taking the time to present a very detailed brief before us. With that, the committee stands recessed-

Mrs McLeod: Mr Chair, before you recess, I was asked to hold any questions for the researcher until the end of the session.

The Chair: Oh, I thought you were simply going to hand them to him. Did you want to-

Mrs McLeod: May I very quickly read them into the record?

The Chair: You may, sure.

Mrs McLeod: I don't think they're onerous, but I do respect the fact that if the research officer is tied up in hearings for the next three and a half solid days that we wouldn't receive responses to these until after we've completed the public hearings.

The first was a question for Cancer Care Ontario-and I will give these in writing to the researcher. Are there any limitations now in their ability to access data or to protect confidentiality and, second, in the absence of Ontario legislation, would Cancer Care Ontario be under the federal privacy legislation?

Second, relating to the HIV/AIDS brief which refers to model legislation, could we get a copy of that particular model that they had referenced?

Third, does the federal legislation conflict with health professions regulation legislation in Ontario? That's really a question around the issue that we've heard repeatedly today about the HPRAC legislation, and we've talked a lot about it in relationship to Bill 159, but if it's possible to get some sense of its relationship to the federal legislation if there is any place where the federal legislation applies to the regulated health professions in Ontario.

Fourth, are there precedents in Ontario for correcting a health record?

Fifth, does the federal privacy legislation apply to physicians' offices? You will recall that the federal Privacy Commissioner did indicate that physicians' offices would be caught by the federal legislation in the absence of an Ontario bill. I believe there's some disagreement in the Ontario Ministry of Health about that, and any clarification we could get would be very helpful.

Last, what legislation governs the length of time that health records must be maintained?

Ms Lankin: I have a couple of questions, if they could be followed up with the specific organizations. Cancer Care Ontario-I have the same question as Ms McLeod. In addition, we heard in another presentation today of a circumstance when a cancer patient was called by someone on behalf of Cancer Care Ontario to ask them if they would be willing to participate in a research study. In and of itself, it appears there's a breach of confidentiality right up front and I wondered if they could address within their own procedures, is it possible that happened, or how would they explain that?

Second, to the Toronto Academic Health Science Council-

The Chair: Ms Lankin, in fairness, I wonder if the group that made that presentation might be canvassed, because, for example, if it was their doctor phoning back I suspect there's no issue of disclosure there. If the doctor was to phone back and say, "I was wondering if you would like to participate in this study"-

Ms Lankin: But the testimony before us was that somebody from Cancer Care Ontario actually called.

The Chair: But in fairness to the researcher, perhaps the first step should be to see what definition we can get there about whether we're talking about a survey company or a-

Ms Lankin: The presenting group was the Registered Practical Nurses Association of Ontario. So we might do that first step of clarification then, if appropriate.

Second, to the Toronto Academic Health Science Council. Later on in the afternoon we had a presentation from Dr Speers, which included a copy of the Helsinki declaration with respect to medical research protocol. I wondered if we could ascertain from the Toronto Academic Health Science Council whether that is a standard that is commonly used in university ethics committees and/or whether it is something they think is appropriate-too restrictive, not restrictive enough-and whether that might be something the committee looks at building reference to in legislation.

The Chair: If there are no other questions, the committee stands adjourned until 9 o'clock tomorrow morning.

The committee adjourned at 1730.