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, Mme Witmer
Ministry of Health and
Long-Term Care
Mr Phil Jackson, director, strategic health policy branch
Ms Juta Auksi, senior policy analyst, strategic health policy
branch
Mr Gilbert Sharpe, counsel
Mr Liam Scott, counsel
Information and Privacy
Commissioner/Ontario
Dr Ann Cavoukian, commissioner
Mr Brian Beamish, director, policy and compliance
Mr Tom Mitchinson, assistant commissioner
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
Ms Frances Lankin (Beaches-East York ND)
Mrs Lyn McLeod (Thunder Bay-Atikokan L)
Mrs Sandra Pupatello (Windsor West / -Ouest L)
Mr Rob Sampson (Mississauga Centre / -Centre PC)
Mr Bob Wood (London West / -Ouest PC)
Also taking part / Autres participants et
participantes
Mr John O'Toole (Durham PC)
Clerk / Greffière
Ms Anne Stokes
Staff /Personnel
Ms Susan Swift, research officer,
Mr Andrew McNaught, research officer,
Research and Information Services
The committee met at 1007 in committee room
1.
PERSONAL HEALTH INFORMATION PRIVACY ACT, 2000 / LOI
DE 2000 SUR LA CONFIDENTIALITÉ DES RENSEIGNEMENTS PERSONNELS
SUR LA SANTÉ
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. Welcome to the standing
committee on general government on our first day of hearings on
Bill 159, An Act respecting Personal Health Information and
related matters. Today we're going to start off with two detailed
briefings.
MINISTRY OF HEALTH AND LONG-TERM CARE
The Chair:
First off this morning is the Ministry of Health. I see a number
of different players before us. I wonder if for the benefit of
Hansard you could introduce yourselves. We have two hours for
your presentation this morning.
Mr Phil
Jackson: Phil Jackson, director of strategic health
policy, Ministry of Health.
Ms Juta
Auksi: Juta Auksi, senior policy analyst, strategic
health policy branch, Ministry of Health.
Mr Gilbert
Sharpe: Gilbert Sharpe, counsel to the Ministry of
Health.
Mr Liam
Scott: Liam Scott, counsel with the legal branch of the
Ministry of Health.
The Chair:
Thank you. Please proceed.
Mr Jackson:
Committee members, thank you for the opportunity to present a
technical briefing on Bill 159. We'll attempt to provide you with
an overview of the context of Bill 159 and technical explanations
section by section of the bill.
To give you an outline of the
presentation, we will provide you with some context and general
history. I'll be asking Gilbert Sharpe, who has had extensive
experience in this area, to provide a general legislative
background, including developments related to federal Bill C-6. I
will then provide you with a high-level overview of Bill 159,
going through some of the key areas and addressing how that would
change the existing scenario. We would then proceed with a
section-by-section walkthrough where we can explain the intent,
and explain in technical detail the bill as drafted.
Mrs Lyn McLeod
(Thunder Bay-Atikokan): Just to get a sense of what our
involvement is as the technical briefing goes along, do we ask
questions throughout or do we ask questions when we get to the
section-by-section explanation you mentioned?
Mr Jackson:
We would appreciate it if we could hold questions until the end
of the presentation.
Mrs McLeod:
The end of the entire presentation?
Mr Jackson:
Until the end of the presentation, because some of the answers to
potential questions are contained in the section-by-section
review.
Mrs McLeod:
I appreciate that. I guess my supplementary question then would
be, what time frame is there for us to come back and ask some of
the questions we have of the ministry staff?
The Chair:
Mr Jackson, what would be your expectation in terms of the time
to make your first presentation?
Mr Jackson:
I think we will be left with probably 25 minutes for questions,
based on the timed presentation that we've done.
The Chair:
From past experience, I think that's likely not going to be
sufficient to deal with the questions.
Mrs McLeod:
I could start in 25.
The Chair:
Perhaps it might make sense to allow you to do your overview
first, but when we get to the section by section, I would be
inclined to allow questions from the floor on each section. If
that takes us over time, assuming everyone's schedule is somewhat
flexible this afternoon-we don't exactly have an onerous
schedule-we might be able to accommodate going a little later
into the lunch hour.
Mrs McLeod:
I appreciate that. I would also be very happy if when we ask a
question on a section and you know that it relates to other
sections that help to clarify the question, we have those other
sections referenced. That would be fine with me. We're just
really looking to understand the issues, and our issues are
probably broadly based, so any sections you have to refer to to
clarify it for us would be helpful.
The Chair:
Clearly, Mr Jackson, given that the point of having the ministry
here is to give the members as sound a foundation on which to
proceed in the rest of these
hearings as possible, it makes sense that we perhaps indulge even
greater allowance for questioning in this session than perhaps is
normally the case.
Mr Jackson:
We appreciate and recognize the decision of the Chair.
To begin the presentation,
it's true that federal and provincial governments have long
identified the need to address the issues of privacy and
confidentiality regarding personal information. In Ontario, from
1978 to 1980 there was extensive work done in what was to be the
three-volume report released by the Krever commission, headed by
Justice Horace Krever, outlining an extensive series of
recommendations concerning the need for specific solutions
regarding protection for personal health information.
The Ministry of Health and
Long-Term Care has examined this issue over many years. It's true
that the most recent consultations on personal health information
privacy legislation were held in 1996 and 1997, with follow-up
consultations on a discussion document that took place in
September 2000. Work had proceeded prior to that in a range of
areas.
The need to develop rules
specific to the health sector for the collection, use and
disclosure of personal health information has been outlined by
organizations such as the Ontario Hospital Association and the
Health Services Restructuring Commission as vital to ensuring a
more integrated and effective health care system. At the same
time, we know from the input we've received from the privacy
commissioner and the privacy community that maintaining the
balance between the protection of privacy of the individual and
effectively meeting the needs of a modern health care system is a
challenge for any policy area and a challenge legally.
Manitoba, Saskatchewan and
Alberta have all enacted personal health information privacy
legislation, and it's fair to say that the complexity and
challenges faced by Ontario in establishing approaches in this
regard have been paralleled by the debates that have taken place
in other jurisdictions. Privacy is one of the most complex and
challenging areas of public policy. There are multiple
perspectives, as the committee will hear from the stakeholders
who are presenting in front of the committee. Perspectives exist
on a range of key issues. Often consensus has been hard to find
on key areas. There are areas where, we believe, it may be
impossible to achieve consensus. However, we have strived in the
work that has been undertaken internally to maintain an
appropriate balance and we look to the work of this committee and
to the input of the stakeholders who will come into this process
to maintain and judge whether the balance that's been crafted in
Bill 159 is appropriate.
I am now going to ask Gilbert
Sharpe, counsel to the ministry, to provide a general historical
context with regard to the legal background regarding personal
health information as the area has evolved. I'll then provide an
overview of the current situation with regard to the legislated
rules that are currently in place, outline how Bill 159 would
strengthen those rules, and provide a section-by-section overview
of the bill.
Mr Sharpe:
Mr Chair, and members of the committee. As you have heard from Mr
Jackson, my role is now one of historian. I hope that beyond that
I can provide a bit of expertise.
Ms Frances Lankin
(Beaches-East York): Historians get paid a lot more than
lawyers, is that what you're saying? Ministry lawyers.
Mr Sharpe:
No, they got a big increase.
Mr Jackson:
For the record, Gilbert is our counsel.
Mr Sharpe: I
have been involved with issues of confidentiality and privacy
since beginning my government career in 1975. At that time the
approach to disclosure of patient information could best be
described as paternal-istic. For example, the old Mental
Hospitals Act, which regulated committal and admission and
treatment of patients in psychiatric facilities for many years,
contained a provision that said the administrator can disclose
information about patients so long as it is clearly not against
the best interests of those patients. So that was the
history.
In the days when I was a law
professor teaching torts and looking at issues of confidentiality
and privacy, there were very few actions, litigation involving
breach of privacy, breach of trust in the health information
context. There was a case in England years ago about a physician
who had disclosed to one spouse the fact that the other had VD
and there was an issue there, but it was very rare, because the
damages were difficult to establish. Even when legislation
existed, it was often difficult to prosecute an offence.
Historical regulation was done primarily through the Health
Disciplines Act and provisions of those sorts that looked at what
health professionals did as ethical practice. One of those rules
was the Hippocratic oath: you don't disclose secrets about
patients; that would be actionable through the colleges.
The first time we really
looked at legislation involving health information that I was
involved in was the work in 1977 around the amendments to the
Mental Health Act, and although they focused primarily on
committal and treatment, we did put forward comprehensive
provisions on confidentiality. Some of those provisions are in
Bill 159, including our attempts in the 1970s to protect
psychiatric information from disclosure even in court, where it
was considered inappropriate. In some jurisdictions-Europe, for
example-physicians and others are prohibited from disclosing even
in court a patient's secrets. It is accorded protection almost
like the priest-penitent privilege.
The idea in the 1970s was
that patients would consent to the disclosure, unless in a voir
dire or private hearing the court determined that it was
essential in the interests of justice to make the disclosure. We
had a parallel provision dealing with records that looked at
whether or not there was likely going to be harm to the patient
or some third party.
These provisions have been
carried over in Bill 159, but they were first crafted for the
purpose of the Mental Health Act enacted in 1978. At that time,
these provisions that I referred to under the Mental Hospitals
Act were repealed.
1020
We then lead into 1979 and
1980, where there were concerns about improper disclosure to the
police and hospitals and what information was being given out,
and a royal commission was established at the time. Phil
mentioned that some of you may recall the work of Mr Justice
Horace Krever in a three-volume report. One of the principal
recommendations in that report served, I believe, as one of the
main reasons it never got implemented for some years: he
recommended patients should have a legislated right of access to
their records. At the time-remember, this is over 20 years
ago-many in the health professions and health facilities were
concerned about the consequences of opening up the records.
Examples were given, for example, of psychiatric records, what
families might have said that would be recorded and what impact
that might have on the treating team and on the patients
themselves in terms of safety and so on. There was also concern
that information would be misunderstood, that it would lead to
malpractice actions. For a host of reasons the government of the
day did not move and implement the recommendations. As I say,
this was one of the principal concerns; it was around access
rights by patients.
The next major round of
amendments to the Mental Health Act came in 1986-87, and at that
time the decision was made by the government of the day to
provide access rights in the context of that legislation. So
again we're moving in a fragmented way. There were regulations
under the Public Hospitals Act that dealt under hospital
management rules with disclosure of the medical record. Consent
would be the rule, and then there would be a number of
exceptions. Then there were these provisions in the Mental Health
Act. But in most health care settings, apart from professional
regulation through the Health Disciplines Act, which is now the
Regulated Health Professions Act, there was nothing. So people
working out in community health clinics, mental health and so on,
had no legislative guidance and it was unclear under what
circumstances disclosures could be made.
In 1986-87 there were a
number of amendments made to the Mental Health Act, and one
involved providing a legislated right of access and the notion of
being able to if not correct your record, at least raise concerns
about it and have statements of disagreement put on the
record-very important issues which were embraced in, at about
that time, the 1980s, the development of the Freedom of
Information and Protection of Privacy Act.
There was debate at the time
that latter statute was introduced about the breadth of its
application. There was a lot of concern that perhaps it should
reach into the community, at least so far as publicly funded
health institutions were concerned, such as public hospitals. The
decision at the time was to leave health care aside from the
application of that legislation, except where health information
would be in the possession of government, to exempt psychiatric
facilities under the Mental Health Act, and not include, for the
time being, public hospitals. The minister of the day said he
would be looking at comprehensive laws to regulate
confidentiality in health care. The needs of the system,
arguably, require special rules. That was the thrust the
government wanted to take on at that time. We're talking mid- to
late 1980s.
In the early 1990s a
principles paper on confidentiality was developed and released
for discussion around whether rules should be developed and what
those rules might say. Work had gone on, frankly, on a version of
this kind of legislation since, from my perspective, the
mid-1970s, and drafts were evolving. I think sometimes as we get
into the specific legislation-we're going to look at
clause-by-clause as Phil gets into describing that-some may say,
in sitting back and looking at it now, that it seems as if there
may be some internal inconsistencies: "Could you explain why this
doesn't seem to quite jibe with that?" Part of the reason is many
drafting people over many years and many evolutions and many
consultations, with input from all kinds of people.
The evolution continued into
1994, with amendments in the long-term-care area, where
provisions on access and record-keeping generally and information
were added to that legislation, with an attempt to maintain some
consistency with the Mental Health Act and the regulations under
the Public Hospitals Act. Provisions from time to time were added
in this area that is known as directed disclosures. Groups like
CIHI, for example, have access to information from hospitals,
which are required to provide the information without consent so
that CIHI is able to provide hospital report cards and specific
information on patient treatment patterns and care.
There is obviously a thread
that's going to run through these hearings. It seems that
whenever we're looking at health legislation, there are these
competing interests of rights of individuals and greater concerns
about what's good for society and for the system and for
allocation of resources. This is best exemplified, I think, in
legislation around health information and privacy. You'll hear
criticisms, certainly, about whether there are provisions in the
legislation that err too much on the side of sharing information
in the interests of planning and managing the system and
allocating resources, and you may hear others saying there isn't
enough discretion available in the ability to share
information.
It may be useful, and I know
I've found this instructive from my perspective, to determine
what current practices are as much as possible, to try to sort
through what happens now, to learn how information gets shared
within the health system. As I said, there is very little legal
guidance. Although there was a Supreme Court of Canada case a few
years ago that said patients do have a right to their records and
to their information, it's very difficult for patients to access
that.
You'll hear some discussion
around the fact that most North American jurisdictions, most
provinces, have provisions in their evidence laws to protect
quality assurance information, the peer assessment reviews that
often happen in hospitals and other institutions to enable
the improvement of quality
and prevention of errors in those institutions. Ontario
historically has never gone down that road. Groups like OMA and
OHA have consistently come forward to various governments making
a claim that these are critical provisions that will not and
should not interfere with the care and treatment of patients and
the ability of patients to have full accountability through every
mechanism, including malpractice actions, of their medical
records and information, but that these types of other records
are also important for other purposes involving peer and quality
reviews.
There are provisions in Bill
159 to address error management and quality assurance. Have we
caught the right balance? We've tried to look at other
jurisdictions and take what we thought were the best approaches.
Again, we've talked to many people over the consultation period,
but obviously this committee will be taking a very close look at
the language to determine whether or not the right balance has
been caught.
There have also been
amendments through the years in statutes like consent to
treatment. The three major initiatives I've been most concerned
about over 25 years have been mental health, and with this
committee looking at Brian's Law last spring we brought some
closure to that on the community treatment order side; consent to
treatment, which for many years was also in need of comprehensive
approaches and laws, has been through a number of iterations, but
there is now a Health Care Consent Act that takes an approach
that has some consistency for health care; and-this is really the
final piece-health information and privacy.
Health information has been a
thread, as I've said, that has rolled through mental health and
certainly health care consent, because those acting on a
substitute basis will have to make decisions on behalf of their
loved ones who may be incompetent, or young children, and they
will need information in order to make those decisions. But there
will be, as we examine issues of age of consent and roles of
parents of those under 16, which is touched on in this
legislation, very tricky issues in some areas of health care
about just who can have access to information and in what
circumstances; again, a very delicate balance of individual
rights. When you are a young person, when do you achieve that
autonomy? We have erred on the side of saying that if the Health
Care Consent Act has recognized an autonomous ability of an
individual to consent to treatment, then the information
surrounding that treatment should also be controlled by that
young person who is competent to give their consent.
1030
You'll see threads in this
legislation, again gleaned from other statutes, like mental
health, where an individual who is considered to be mentally
incapable of making decisions on disclosure should have a right
to challenge the finding that they are incapable. This is a
principle that was brought in some years ago on the
consent-to-treatment area.
You'll also hear some
discussion from a legal perspective around issues like implied
consent. I think this process is going to be very constructive if
we're able to have some legal debate around what existing laws
are, these principles and how they would apply.
Implied consent is the
notion, going back to the days of every first-year law student,
that if you go into a doctor's office and you put up your arm to
get a needle, you've implied that you've given permission to have
the needle given to you. It's difficult to imply consent in
confidentiality. Some may suggest that when you go into a
hospital and you sign a form that anything that happens to you
there can be disclosed in certain settings and to certain
individuals and for certain purposes-as a lawyer, it's difficult
to understand how that would apply practically to serve as any
kind of protection or defence for the health care team because
it's one thing to give an implied consent to treatment that's in
front of you. When information has not yet been compiled in your
file and you don't know what it's going to say, how can you give
either an actual or an implied consent? How can it be informed?
The information isn't there? If you ask questions, you don't know
what it is that's going to be disclosed. So that is a principle
that applies well in the consent-to-treatment area that I don't
think translates very well into health information.
This leads into issues around
debate around C-6, the federal bill which is now law and awaiting
application to the health systems within provinces over the next
few years. You're going to have much discussion and debate around
what "substantially similar" means and what the problems really
are with that bill and why its principles can't apply to the
health system.
The Ontario Ministry of
Health put two briefs in to Ottawa, to the House of Commons and
the Senate. If you're interested, when we do get into the
technical discussions, I could provide you with three or four
practical, clinical examples. Essentially, I don't believe that
Industry Canada, in developing what really is very good law for
the e-commerce and commercial sectors, had in mind the health
care sector. This is obvious in a number of areas; there are no
provisions for substitute consent. There are all kinds of reasons
why that won't work in health care.
Health Canada would normally,
as you know, be the ones to lead discussions with the provinces
on health legislation generally that has a national and a
provincial perspective, which this legislation certainly does. If
the committee is interested, when we do get into discussion on
specific issues, and perhaps later on, after you've had the
opportunity to hear from people like the federal privacy
commissioner, there would be an opportunity to discuss with you
in detail what the concerns are. I think, being a public record,
the Ministry of Health's briefs would be available to the members
of the committee.
I should stop now and let
Phil pick up with his formal presentation. I simply want to
conclude by saying that there have been allegations that this
legislation in many respects does not protect privacy. Others
have said it doesn't facilitate information sufficiently and that
there are too many exceptions to the principle of consent. The
exceptions could have been
grouped. Instead of having two dozen, I suppose we could have
brought them into five or six, from an optics perspective. But I
can tell you that each one has been very carefully debated and
frankly emanates from the very many consultations, cutting across
four governments and 25 years in my experience. Can this be
improved? Of course. That's what we're hoping to help you do. I
look forward to your questions and to participating in the
process.
Mr Jackson:
Part of the importance of Gilbert providing some of the legal
history around the evolution of personal health information
legislation but also in terms of the conceptual debates and
discussions that have gone on over multiple years is to bring us
to a point where we can attempt to outline some of the key areas
in the current situation. What are the current provisions that
are in place? What are some of the current gaps that are in place
regarding protections of personal health information? It's fair
to say that the current legislated rules regarding the
collection, use and disclosure of personal health information in
the health sector have grown up in multiple statutes. It's fair
also to say that they're inconsistent, many areas are narrow and
in some cases are non-existent.
While the Freedom of
Information and Protection of Privacy Act, which came into force
in January 1988, and the Municipal Freedom of Information and
Protection of Privacy Act, which came into force in 1991, apply
to government institutions and would include in the health sector
such things as municipal homes for the aged and public health,
FIPPA and MFIPPA, as the acts are referred to, do not apply to
the vast majority of the health sector. Where legislative rules
do exist currently, for example under various acts that govern
the health professionals, they're not comprehensive. They
typically deal only with the disclosure of information, often not
with the collection or use of personal health information. Taken
together, the current legislated protections as they exist are
incomplete at best.
There are large areas of
health care where there are no legislated rules in place at all
specifically protecting personal health information privacy. This
includes things such as unregulated health professionals,
community mental health clinics, a health care aide, a community
health promotion worker or health adviser. While there are
ethical standards and professional conduct demonstrated by these
workers in their day-to-day activity of providing health care,
there are no specific legislated rules and there is little
recourse for an individual when information is inappropriately
shared.
The limited legislative
protections that currently exist and the inconsistent nature of
some of the current rules have been identified by many as a major
privacy concern. With no clearly articulated set of rules that
cover all health care providers, there's a significant barrier to
the implementation of more effective and more integrated patient
care. If providers don't know the rules or are working from
different rules with regard to the sharing of information, it
becomes a major challenge to establishing a more integrated
health system. The Health Services Restructuring Commission
commented in their paper on health information management that
this was a major barrier. They also referred to it, in their work
on integration, as a challenge the health system needed to
address in order to be able to move forward with more integrated
care.
It's also true to say that
the existing rules have not sufficiently kept pace with the
changes to the way health information is shared. For example, in
many areas rules typically would not cover unrecorded
information. Potentially this could include information gained
through a telephone consultation or information shared between
health care providers in conversation. In the area of electronic
transfer such as e-mail, there are no specific legislated
requirements currently in place creating obligations on the
health care provider when transferring information.
No independent oversight
powers outside of those provided by FIPPA and MFIPPA exist for
the health sector regarding the collection, use and disclosure of
personal health information. FIPPA and MFIPPA would catch
municipal homes for the aged and not much more. This was a major
area of recommendation by the Krever commission of the need for
independent oversight for the uses of personal health information
in the health sector. I understand that the provincial privacy
commissioner will no doubt speak in detail to this issue when
she's here later in the day.
1040
Currently, in a rapidly
evolving world of increased computerization, increased electronic
transfer, the rules that are in place now regarding computer
matching specifically in terms of the Ministry of Health are in
the form of a directive; they're not in legislation. This is an
area where there has been considerable scrutiny and certainly is
an area where we have tried to come up with approaches that would
modernize the way in which health information protection could be
enacted.
Again under the current
situation, there is a major challenge when transferring
information out of the province, when personal health information
is to be transferred out of province or out of country, a typical
scenario being that if you imagine a senior spending part of the
year in the south, currently there are no specific legislated
requirements on the health information custodian or on a health
information holder regarding the precautions that need to be in
place when transferring information out of jurisdiction. With the
move to increased use of technology and increased use of
computers, with a highly mobile population and an increased
technical capacity, this is obviously an area of concern to those
in the privacy community, balanced with the fact that the move to
greater electronic transfer is a reality in the day-to-day
evolution of health care. So we would anticipate that this is no
doubt an area where there will be discussion from stakeholders
with different perspectives.
In the area of marketing,
there are currently no legislated rules specific to the use of
personal health information for marketing purposes. In the area of
fundraising by, for example, hospital foundations, there are no
legislated rules in place now on how information that a hospital
holds might be used by its foundation to fundraise, for example.
While foundations strive to be ethical and strive to be
professional in the way in which they manage the health
information that they hold, the fact that there are no legislated
rules specifically in this area is of concern to the members of
the public and it also does not provide the foundations
themselves a framework within which to operate.
With regard to research,
while the provincial freedom of information act and the municipal
freedom of information act contain provisions for research and
approaches required when undertaking research using personal
information, it's true to say that FIPPA and MFIPPA don't apply
to large areas of the health sector and hence there is no
provincial legislation, other than FIPPA and MFIPPA, prescribing
how and when consent should be obtained for the use of personal
health information in research. This is an area that other
jurisdictions have grappled with but Ontario as yet hasn't got a
legislated solution to this problem. Where the health care
provider may also be a researcher, this presents significant
challenges practically and ethically.
Regarding the power of the
minister to direct disclosures of information that may include
personal health information, this has been the subject of
scrutiny. It's also fair to say that the powers to direct
disclosures have evolved over many years and exist in many
statutes. They exist in the Public Hospitals Act now. Basically
the way in which a directed disclosure works practically is that
there's a requirement established for the collection and transfer
of a prescribed set of data.
The example that Gilbert
alluded to was CIHI, the Canadian Institute for Health
Information. It collects information now under directed
disclosure from individual hospitals in order to track and report
on utilization and on the effectiveness of programs, and enables
the production of such things as hospital report cards and
various other assessments of the capacity of hospitals to deliver
the care they're funded for.
Mrs McLeod:
Excuse me, Mr Chair. Could I ask just one question? Is it allowed
and does it happen that there is identifiable information
transferred to CIHI under the current act?
Mr Jackson:
Currently, yes.
Mrs McLeod:
Personally identifiable information?
Mr Jackson:
Yes, and I will give you more detail as we go through section by
section.
So currently in the Public
Hospitals Act there is the power to direct disclosures. In the
Health Insurance Act there is the power to direct disclosures. In
the Independent Health Facilities Act there is the power to
direct disclosures. In the Drug and Pharmacies Regulation Act
there is also the power to direct disclosures of information. So
in the current situation, which has evolved over many years and
as a recognition in part of the need for adequate information for
the planning and management of health care, various provisions
have been put into legislation which allow the minister/ministry
to direct disclosures.
These provisions exist now,
and they exist currently in the absence of the protections set
out in Bill 159. I'm sure the area of directed disclosures is
going to be an area of scrutiny and certainly is an area where
there is need for discussion. It's also, from the ministry's
perspective in terms of the ability to plan and manage the
system, fair to say that there are enormous information gaps that
currently exist around how you would go about planning and
managing such sectors as long-term care, community programs and
rehabilitation, with the sort of quality information that
organizations such as CIHI and ICES, the Institute for Clinical
Evaluative Sciences, have for the hospital sector. For other
sectors, because we have not required the collection of that
information, the information often is not collected in a usable
format to sufficiently inform policy, to sufficiently inform
decision-making.
The current situation with
regard to access to your own medical records, and Gilbert touched
on this in his initial overview: a very basic principle. A
Supreme Court decision has already happened regarding access to
your own medical records. It exists in common law. Legislatively,
the right exists in the Mental Health Act, and, for those small
parts of the system where that applies, the legislative right to
access your own record is set out. For most of the health system,
this basic provision is not covered by any legislative rules, and
denial of access to records by a health information custodian-by
a physician, by a hospital-would typically have to go through a
time-consuming and expensive court process.
The right to make a
correction to your medical record: currently there are no
legislative rules in place, except for institutions covered by
either the Mental Health Act or FIPPA/MFIPPA, to request a
correction. So currently-take that to its logical extreme-FIPPA
and MFIPPA, which would include a municipal home for the aged but
wouldn't include a hospital, would provide a right to correction
in one area. The majority of the health system doesn't fall under
these acts, so the right to request a correction in your own
record is effectively not backed up by legislation.
Disclosure of personal health
information in court: Gilbert had touched on some of the
provisions in the Mental Health Act. The Mental Health Act
currently provides, subject to certain provisions, that unless a
patient consents, patient information cannot be used in court
unless essential to the interests of justice.
1050
Now, there are other areas of
information where the information is equally sensitive to that
which will be covered under the Mental Health Act. The test for
those other areas is now simple relevance; it's not whether it's
deemed essential to the interests of justice.
Disclosure without consent
for the purposes of conducting an investigation, some of the
current legislation in this area: I wish to read from FIPPA. The
Freedom of Information and
Protection of Privacy Act defines law enforcement as meaning:
"(a) policing,
"(b) investigations or
inspections that lead or could lead to proceedings in a court or
tribunal if a penalty or sanction could be imposed in those
proceedings, and
"(c) the conduct of
proceedings referred to in clause (b)."
It then goes on to define
"personal information."
The language used in FIPPA
regarding law enforcement is where disclosure is by a law
enforcement institution to a law enforcement agency in a foreign
country under a written agreement or where disclosure is to an
institution or a law enforcement agency in Canada to aid an
investigation undertaken with a view to a law enforcement
proceeding if a law enforcement proceeding is likely to
result.
Currently that's the language
in FIPPA. As we go in further, we'll give examples from Bill
C-6.
It's fair to say that this
is an extremely complex area. It's one of the most charged areas.
Certainly with regard to the work and what we've heard from
various stakeholders, there are competing interests at play;
there are competing perspectives regarding this issue. Currently,
that provision is in place for FIPPA. I will read later from C-6
around the provisions that would apply in Ontario if C-6 were
brought in in the absence of a substantially similar piece of
legislation.
Also with regard to
disclosures, there is mandatory disclosure of information now
that health care providers are required to make, for example, to
children's aid societies for the purposes of monitoring and
preventing child abuse. Those have long been in place and
recognized as an important component where essentially the right
of the individual to privacy is overriden by a broader social
responsibility. I think the committee is going to be spending
significant time engaged with that debate around the appropriate
balance between social good and individual rights protection.
With regard to the current
situation, it's fair to describe a patchwork history of attempts
to grapple with the issues of personal health information privacy
in a range of statutes, some with limited coverage and statutes
with inconsistent coverage. We also have areas where the
legislative guidance required for unregulated health care workers
is absent regarding what their obligations are when they obtain
personal health information.
Because it is so important
to the overall discussions of the committee and because it's been
important to a number of jurisdictions that engaged in work in
trying to develop personal health information protection
legislation, I want to provide some context in terms of the
federal legislation, Bill C-6.
Federal Bill C-6,
previously C-54, the Personal Information Protection and
Electronic Documents Act, was originally introduced October 1,
1998. It was reintroduced in 1999 as C-6, receiving royal assent
on April 13, 2000. Part I of the bill, pertaining to privacy,
came into force on January 1, 2001.
As of January 1, 2001, the
C-6 legislation will apply to organizations that collect, use or
disclose personal information in the course of interprovincial
commercial transactions. As of January 1, 2002, the legislation
will apply to all interprovincial transfers of personal health
information in the course of commercial transactions.
If by January 1, 2004,
Ontario does not pass legislation that is substantially similar
to C-6, the legislation will apply to all organizations that
collect, use or disclose all personal information, including
personal health information, in the course of commercial
transactions.
For the health sector this
would include a range of areas that could be considered
commercial; for example, private laboratories, pharmacies and
some nursing homes. The challenge for Ontario and for the health
sector is that C-6, which has been largely designed with
commercial transactions in mind, with an emphasis on privacy in
the commercial sector, would apply to one piece of the health
sector. It would establish one set of rules for one piece of the
health sector while, in the absence of substantially similar
legislation, the existing patchwork would continue to apply in
the other sectors. This would create significant issues with
regard to the continuity of care: which set or rules are you
following?
It's also true that C-6-in
part I would suggest because it's designed primarily for the
commercial sector-doesn't contain some key concepts that are
essential for health care and the way health care is
delivered.
One example is that while
C-6 is heavily consent-based for information described as
sensitive, there are no provisions regarding substitute
decision-making. The challenge of obtaining consent when
incapacity is an issue is not addressed in C-6; in part, because
it was not crafted for the health sector per se.
Gilbert had referred
earlier to some examples that informed the submission the Ontario
Ministry of Health made regarding C-6. I'd like Gilbert to give a
couple of examples to sort of illustrate in a practical sense the
potential implications that the ministry had previously flagged
regarding C-6.
Mr Sharpe:
I will quote a few examples from the brief.
An elderly man living in
the community has several health conditions for which he sees
different doctors. He takes a variety of drugs and has the
prescriptions filled at whatever pharmacy is convenient to his
home or the office of the doctor he's just seen. In this type of
situation, without an ability to quickly link information among
the various doctors and pharmacists, the risk of
over-prescription and adverse drug reactions is significant. C-6
would be a barrier to the sharing of information in this
circumstance.
Another example: a woman
goes to her doctor about some symptoms she's been experiencing.
Her physician sends a requisition and the patient's blood and
urine samples to a private medical lab for analysis. C-6 requires
the lab to obtain consent from the woman even though no direct
contact is made between her and the lab. The lab might then need to send her information
to another lab for further analysis or verification of results.
C-6 requires the lab to explain to her the likely uses and
disclosures of the information and obtain her consent to these
uses and disclosures. The explanation must occur at the time of
collection, so even before the health care is provided or, if
after collection, before use.
There are a number of other
examples in the material. CIHI has been mentioned by both Phil
and myself. Under C-6, CIHI would be required to obtain consent
before it can collect personal information from hospitals even
though, as we've indicated, the Public Hospitals Act does
currently permit such disclosure, and subsection 7(3) of C-6
would be of little use, because CIHI will no longer be able to
collect comprehensive data.
1100
A number of health statutes
in Ontario, such as the Independent Health Facilities Act and
Health Protection and Promotion Act, currently permit disclosure
of confidential information by government employees in connection
with the administration, or for the purposes related to
administration, of acts. C-6 would require recipients, for
example, labs, to obtain consent before they could collect that
information. Some private labs currently work inside hospitals;
the Toronto Hospital and Sunnybrook and Women's College are
examples. The lab information that is obtained inside the
hospital would become part of the patient's record and, again, it
wouldn't be clear to what part of the record C-6 would apply. You
would have different rules applying to different parts of a
medical record.
Another example, the final
one: a plastic surgeon removes a basal carcinoma from a patient's
cheek-this is a procedure currently covered by OHIP-and at the
same time removes a mole, which is a cosmetic procedure not
covered by OHIP. The doctor sends the specimens for analysis to a
community-based lab which, although it's a private corporation,
is paid by OHIP. Services provided above the max funding level
are not reimbursed. C-6 would apply to one part of the lab
operation and not to others. You would have to have two sets of
records and so on.
There are a number of other
examples in both of the briefs the Ministry of Health submitted
that would demonstrate the inflexibility and inappropriateness of
the C-6 rules to the health system.
As I've indicated, we have
spent a great deal of time trying to wrestle with these competing
issues of provisions in the act under tight security measures
that would permit a free flow of information within the health
system to enable patients to be treated appropriately and
quickly. Draft legislation was circulated in 1997. In the last
few years there were three rounds of consultations led by three
different parliamentary assistants. These provisions strike a
balance that would address the examples I've just given. C-6 was
not developed with that in mind.
I hope that helps clarify
what you're looking for.
Mr
Jackson: Yes. In part it is only to serve as an example
of potential practical issues that arise with C-6's
implementation in the health sector. Ontario is not the only
jurisdiction that has grappled with the issue of carving out its
own set of specific rules for the sharing and use and the
protection of personal health information in the health sector.
In the context of concerns around privacy and of the discussions
that were going on at the time around C-6, a number of
jurisdictions moved to introduce legislation specific to the
health sector and specific to personal health information.
Manitoba, Saskatchewan and Alberta have proceeded with
legislation specifically in this area.
I would now like to move on
into what Bill 159 as it is currently drafted would change, some
of the key areas. Here I am speaking largely from the technical
perspective, from the perspective of the technical work that
bureaucrats have done. I'm not addressing the broader policy
context in which this exists.
Mrs
McLeod: May I ask a question? With the discussion of the
federal legislation-and I know we have the federal privacy
commissioner coming to the committee tomorrow, so I assume the
appropriate time to get into a further analysis about C-6 and its
compatibility with this bill would be tomorrow morning. I am sure
there will be some-
Mr
Jackson: If you wish to ask a question regarding that
today, we will be in a position to give some responses, but the
role the federal privacy commissioner plays would perhaps give
them expertise, so the committee should also raise the question
then.
Mrs
McLeod: My question is, will there be an opportunity for
the ministry in turn to respond after we hear from the federal
commissioner tomorrow?
The Chair:
We might invite Mr Jackson to actually have someone in attendance
tomorrow morning, if that's possible, and we could have a timely
response.
Mrs
McLeod: I think that might be appropriate. I mean, we're
not simply looking to set up a confrontational atmosphere but
actually to find out how the two bills interrelate. So it would
be helpful to hear from the provincial ministry as well.
The Chair:
I'm sure it would. If that could be arranged, we'd be grateful if
you could have a staff member able to comment on the testimony of
the federal privacy commissioner.
Mr
Jackson: Just for the record, we don't have an interest
in an adversarial relationship with the federal privacy
commissioner. We would be interested in terms of the comments
specific to the CSA code and the areas around "substantially
similar," which have not been fully articulated and which have
created some difficulties in terms of anticipating how you craft
a piece of legislation without knowing the rules regarding
"substantially similar." So it would be useful for us to be
present.
Ms Lankin:
You may want to share some questions with us that you would like
us to put on the record, in fact.
Mrs
McLeod: I'm happy to ask some questions now about the
presentation the ministry has just made, but it just seems that
it would be more constructive if we heard from the federal commissioner and then had a
sense of how the two presentations relate and where our questions
come in.
Mr
Jackson: That would be very useful for us, because we've
certainly asked some questions in the past and it would be
helpful, with a new commissioner, to get a sense of his
understanding of what substantially similar constitutes.
Mrs
McLeod: And I had some questions arising from the
presentation that Ontario made to the federal government when the
federal government was developing its bill. I'd be happy to ask
those now, but if we have an opportunity to come back to this
whole issue tomorrow, or even tomorrow afternoon, Mr Chair, I'd
be happy to just hold that whole discussion until tomorrow.
Mr
Jackson: Yes. We'd be happy to at least know what those
questions might be so that we can give some time this evening to
thinking through if we need additional material prepared to be
able to engage, just for the purposes of having as informed a
discussion as we can on this.
The Chair:
Mrs McLeod, did you wish to put them in writing or express them
orally now?
Mrs
McLeod: I can certainly indicate a couple of areas. I
don't want our analysis of the clause-by-clause bill to be
diverted by going too extensively into this. I have some
questions around whether or not the Ontario bill answers a
concern in the federal bill which would restrict the transfer of
identifiable information for private health care custodians. Then
I have some questions about whether or not that same limitation
would apply to transactions with publicly funded institutions or
whether or not this is an attempt to make it easier for privately
run health care facilities. So that's one area.
Mr
Jackson: I understand the question, yes.
Mrs
McLeod: The other is this huge area of difference in
terms of disclosure and requirement for consent. I just have a
lot of questions around how-but those would be questions I have
all the way through the Ontario bill. So those are the kinds of
areas. I don't think there would be anything that was a
particular surprise, based on what you've already acknowledged as
the areas of controversy in the bill.
Mr
Jackson: Yes.
The Chair:
Ms Lankin, did you have a question?
Ms Lankin:
No, I just wanted to suggest that at the end tomorrow there may
be a number of questions on which we will want further response
from the ministry. Presumably committee, as we look to the
beginning of the actually hearings, will have another opportunity
to put informed questions directly to the ministry then that
arise from this kind of briefing. So I'd prefer that we wait
until the end to put a number of those things on the record.
The Chair:
That's certainly why we allowed a couple of weeks' time
separation between these technical briefings and the public
hearings. Hopefully you'll have all those questions answered to
your satisfaction.
Mr
Jackson: What Bill 159 would change, some of the key
areas, before we go into the substantive section-by-section:
probably the most significant contribution that Bill 159 would
bring is it would put in place consistent rules across the health
sector. It would cover areas currently where no legislative
protections exist for personal health information. So it would
draw in those unregulated health providers and unregulated
facilities and place rules around the uses and disclosures of
personal health information by areas currently not
legislated.
The IPC would provide
independent oversight for all health information custodians and
it would include the Ministry of Health and Long-Term Care as a
designated health information custodian. It would introduce
consistent protections. Section 12 of Bill 159 as currently
drafted will place general limitations on all collections, uses
and disclosures of personal health information across the entire
health sector. Those general limitations would be that no
personal health information shall be collected, used or disclosed
if other information would serve the same purpose; no more than
registration information could be collected, used or disclosed if
registration information would serve the purpose; no more
personal health information than is reasonably necessary to
achieve the purpose should be shared, collected or disclosed;
and, to the extent that it's reasonably possible, the identity of
an individual is to be concealed. Section 12 would apply across
the board. It's an important provision to refer to as we're going
through committee when reading the other sections. It's one that
reads into other sections of the bill.
1110
With regard to the
protection of information flow out of Ontario, which is section
37, Bill 159 will provide additional protections regarding the
sending of personal health information outside of Ontario or the
use of personal health information outside of Ontario by a
custodian where the custodian collected that information in
Ontario. That's section 37. A health information custodian would
not be allowed to disclose information outside of Ontario unless
the act would permit the same use in Ontario and the custodian
believes on reasonable grounds that the person receiving the
information would take appropriate steps to preserve the
confidentiality of the information.
On section 37, I would say
this is a very challenging area to deal with because you're
trying to address the rules that you can put in place in Ontario,
within the jurisdictional power of Ontario, specific to transfers
outside of the jurisdiction. So we've attempted in looking at
this to craft something that places a responsibility on a
custodian who's in Ontario to consider these factors and, in
doing so, try and maintain within the power that Ontario would
have to legislate in this area.
With regard to security
measures and accountability at sections 18, 19 and 20, there is
currently no existing statute for the health sector as a whole
that sets out the obligations on all health information
custodians regarding the administrative, technical and physical
safeguards that are to be in place. Bill 159 sets these out in
sections 18, 19 and 20, and these would apply, if Bill 159 were
passed, to the entire
health sector. It would basically put in a requirement for the
administrative, technical and physical safeguards.
With regard to security
measures and accountability, Bill 159 as drafted would require
written policies regarding the retention and disposal of medical
records and ensure that privacy is protected when the medical
records are disposed of. As I'm sure you're aware, this has been
an issue in the past over a number of years regarding records
that have been destroyed.
With regard to openness,
health information custodians will be required to establish
written policies regarding their information management
practices, and these policies would need to be made available to
the public upon request. In relation to this section, there is
also a clause pertaining to unanticipated disclosures, section
25. Health information custodians will be required for the first
time to inform the public and patients of the anticipated uses to
which their personal health information may be put. That's
basically a transparency provision that would allow individuals
to know up front how their personal health information may be
used in the day-to-day provision of care, and legitimate uses
that a custodian may make of that information. If a subsequent
unanticipated use is made of the information, the custodian will
be required to note this matter on the individual's record. So
it's both the notification of what information may be used for
and, where it falls outside of that spectrum, the unanticipated
disclosures clause.
A key provisions in Bill
159 builds on the work that was done in the Mental Health Act
that Gilbert alluded to. Bill 159 will provide an expanded
legislative right for individuals to access their own medical
records for health information custodians across the health
system. Where a custodian refused access to the medical record,
the bill would provide a right of appeal to the privacy
commissioner. The commissioner could mediate and, if mediation
did not work, the commissioner could conduct an inquiry and audit
disclosure under section 69. Failure to comply could result in
fines of up to $500,000 for an institution.
The right to request
corrections to a medical record: Bill 159 would expand the
legislative right to request a correction on a medical record,
section 50. The health information custodian will be required to
amend the record or, where there is a disagreement between the
patient and the health information custodian, to attach a
statement of disagreement to the record. Section 69 would also
provide the commissioner with the power to launch an inquiry in
response to a complaint regarding the failure to comply.
The right to request
corrections and the right of access to records would be
significantly expanded from the current provisions that exist now
and would apply across the Ontario health system.
Also with regard to some of
the key provisions, section 26 would introduce a limit on
marketing. Currently no legislated rules apply specifically to
the use of personal health information in marketing or market
research. Bill 159 would prohibit the use of personal health
information without consent for the marketing of services or for
market research.
Limits on fundraising,
section 26: currently there are no legislative rules that apply
to fundraising, for example, by a foundation. Bill 159 would
introduce protections for the first time. Hospitals and other
health care facilities would only be able to use or disclose
information without consent for fundraising purposes where
individuals are provided with a written notice to opt out.
Special rules will be in place regarding sensitive information,
where the facility itself, if the facility's name were disclosed
in the fundraising effort, may inadvertently trigger an
individual's awareness or family members' awareness of the
condition which the individual may have been admitted for. So
there will need to be discussion at committee around what
specific additional provisions might be needed with regard to
sensitive information. It's an area we've certainly attempted to
grapple with, balancing the need for hospital foundations-many
members of the community contribute and donate to their local
foundation and play a valuable role. At the same time, they have
access to information. We have attempted to craft section 26 and
limits on fundraising that wouldn't end fundraising by
foundations but would put in place requirements they would have
to meet and limitations on their access.
In court settings, Bill 159
would take some of the conceptual work that was done in the
mental health legislation and would introduce protections against
personal health information being disclosed in court without
consent unless essential to the interests of justice. This is
obviously subject to certain criteria where a diagnosis is part
of the case. There are obviously exceptions stipulated in the
legislation. This would expand significantly from what currently
exists, where the benchmark is relevance and not whether it's
essential to the interests of justice.
With regard to research,
section 32, this is research using recorded personal health
information. Bill 159, as currently drafted, would require all
research projects proposing to use recorded personal health
information for a research study to obtain ethics approval from a
recognized ethics review body. Here is extensive work that will
be required as a follow-on, should the legislation pass, to
define by regulation who a recognized ethics review body would
be. There are many of them. Currently many academic institutions
have, as a matter of course, ethics review bodies. Currently on
our projects there is no requirement for somebody wishing to
proceed to go through a mandatory ethics review process. If the
ethics review committee determined that consent was required, the
study could not proceed without individual consents being
received for the purposes of the study.
1120
With regard to computer
matching, Bill 159 would elevate to the level of legislation the
core components that are in place in the form of policy
directives, so it would establish a legislative framework to have
rules in place regarding
computer matching. When we go section by section, we can speak
specifically to that.
Finally, the fines that
would be in place under the legislation: currently the fines are
$5,000 and $25,000 under the Mental Health Act and FIPPA
respectively. The fines, and we can go into detail in the section
as we go there, would be $50,000 for violation of the act for
individuals and $500,000 for organizations.
With your permission, we
would like to now walk through some of the key sections.
Ms Lankin:
I have two quick questions, and first of all a request. Perhaps
the notes that you presented from and that Mr Sharpe presented
from could be circulated to committee members. I'm not sure, for
the clause-by-clause part, if there are good notes, but it would
be very helpful. We will eventually have it in Hansard, but for
committee it takes a bit. As we meet with the privacy
commissioners this afternoon and tomorrow, if we could have that,
that would be great.
Mr
Jackson: Mine has scribble all over it, but I can get
you a clean one.
Ms Lankin:
I just ask that now because perhaps someone could be making
copies available to the clerk so we can get that for this
afternoon.
Secondly, in the
preliminary briefing opportunity that we had with the ministry,
there are a number of areas where I asked for further in-depth
clarification. Most of them I suspect will come in the
clause-by-clause. One-you alluded to this-was for a briefing note
with respect to how information is currently shared. You've given
us some examples, but I think it would be helpful for committee
to as much as possible have that spelled out: how information is
shared, by whom, for what purpose and in what form-identifiable
form or not. Some of the concerns that are raised about what this
bill will allow actually in some cases are completely warranted
concerns. In other cases I think people would be surprised to
know that the bill is actually a restriction on what goes on now.
That doesn't mean the bill in its form is correct, but it means
the debate needs to be more informed. I think committee members
would find it really helpful if that could be done by the time we
get to submissions and we're debating and hearing from the public
on these various points.
Mr
Jackson: In terms of the legislation regarding the
sharing of information, if I could just understand specifically
what you're requesting.
Ms Lankin:
For the briefing note?
Mr
Jackson: Yes. Just a review of the legislation regarding
it?
Ms Lankin:
For example, you made reference to CIHI. I think a lot of people,
as evidenced by Ms McLeod's question, wouldn't know that CIHI
information actually can be disclosed, direct disclosure, in
identifiable form. ICES is another example. We came across in
Brian's Law a requirement in the legislation to share information
around community treatment orders and after the fact tried to
plug a little hole there. There are lots of places where
currently health information is either directed to be shared or
required to be shared for either research or treatment purposes
in varying forms. While some of that is understandable, as you go
through the clause-by-clause and explain, I think there are some
things that won't be captured that would be useful as background
information in a bit more detail than the high-level briefing you
gave for us today.
Mr
Jackson: If we now turn to the section by section. So
it's page 4, which is section 1. Section 1 sets out the key
purposes of the act: to protect the privacy, confidentiality and
security of personal health information while facilitating the
use and disclosure of personal health information for the
improvement of health care. Purposes of the act set out the
duties and mechanisms to protect the confidentiality and security
of personal health information, establish rules for the
collection, use and disclosure-
The Chair:
Excuse me, Mr Jackson. I just want to direct the members of
committee. At tab 11 you'll find the bill recopied in a way that
I think might make it easier for you to follow Mr Jackson section
by section.
Interjection.
The Chair:
Is mine tabbed separately or differently?
Ms Lankin:
Do you have it open at tab 11?
Mr Rob Sampson
(Mississauga Centre): I have the bill in front of me,
which is even better.
Ms Lankin:
No, but do you have a tab 11?
Mr
Sampson: No. I have the bill in front of me, which is
even better.
Ms Lankin:
Is there a difference between the information that has been
provided to caucuses?
The Chair:
No. As Chair I've had this photocopied in a way that it's the
bill translated in a different way. I was just suggesting it was
easier to read. This was simply expanded.
Ms Lankin:
But the format-
The Chair:
My apologies. I just thought that format was easier.
Mrs
McLeod: I agree.
Ms Lankin:
Mr Chair, I agree. The format in which the bill is set out and
the explanation of the clauses beside it is in fact what ministry
staff may be working from, and it would be very useful for all
committee members. I assume if you as Chair have it that other
members of the committee have it. I don't have it. I object to
that. I think it should be shared with all members of the
committee before we proceed.
Mr
Sampson: Mr Chair, if I could just comment. I don't know
what's been shared with the other members of the committee.
Perhaps our friends legislative counsel can tell us what has been
shared. I don't know, but I'm assuming that what you're doing is
going through the bill clause-by-clause.
Mr
Jackson: I'm going through clause-by-clause, yes.
Mr
Sampson: So references to the bill would be just as
appropriate as references to any of the other tabs that we may or
may not have. I have not read tab 11 in detail, so I don't know
what's here that's different from what's not in the bill. But if you want to have tab 11,
I don't know if there's a problem, Chair.
Mrs
McLeod: Is it possible that the bill has been set
out-
Mr
Sampson: I think it's been broken down into sections,
literally.
Mrs
McLeod: -with explanatory notes?
The Chair:
We took the French out.
Mrs
McLeod: Are there any explanatory notes in tab 11,
itemization of sections of the bill?
The Chair:
No formatting, just as-
Mrs
McLeod: Can I see the second page there, Steve, to get a
sense of it? There's a page behind that that has side rules? I
think that adds to our understanding of the bill. I don't know
how necessary it is, but it just would be helpful if that's what
the ministry staff is reading from.
The Chair:
That would appear to just be a definition on the side. You can
correct me if I'm wrong. Yes, it's the definition of "personal
health information."
I'll tell you what. As we
go through here, I'm sure if there's any information that isn't
already obvious, we can get the ministry to make copies of any
other definitions that might be included in here. It was my
understanding-
Ms Lankin:
Chair, it's easier to go through your format-
The Chair:
Well, again, in the interests of the time before us here now, why
don't we go through the clause-by-clause and we certainly can
have copies made of anything that comes up in the course of the
morning's discussions.
Ms Lankin:
I understand that tab 11 in the government members' books has
come up in the course of discussion, and I would ask that copies
be made available. I don't think it is private information. I
don't think it is ideologically confidential information. I think
it may be some work that has been provided by your caucus-I
understand that-but if it's in an easy format and has references
and definitions, given that our intent here is to understand the
detail of the bill, it would facilitate it, I would request that
it be shared.
1130
The Chair:
I thought I just said that, Ms Lankin, but if you want it on the
record in your words as well, that's fine.
Ms Lankin:
I didn't-
The Chair:
I thought I just said, as we go through right now, if there's any
information, that's the whole point of the technical briefing. So
if there's a single definition or anything else that isn't
clearly laid out in whatever you have before you, I would
certainly expect the ministry to copy that and give you that
detail when we're done.
Ms Lankin:
Does that include the document that you have at tab 11? I really
think that ought to be copied-
The Chair:
It's not under my control to speak for the ministry, obviously,
but the fact of the matter is-
Ms Lankin:
No, Mr Chair, I'm sorry. The ministry is actually not allowed to
prepare information for one caucus that is different from the
others, so I'm assuming that this is caucus information that's
been provided. If it's confidential in some way, fine, but if
it's not and if it's helpful to the committee, I'm just saying
share it.
Mr
Sampson: Maybe if I can clarify, I think the document
being referred to is something that has been prepared by the
caucus staff for the support of the caucus members here. To the
extent that there's something here that is of general interest I
don't see any problems with that, but to the extent it's a
document prepared, and I think that's what it is, by caucus
staff, then I'm sure you could understand it would stay with the
caucus members it was prepared for, unless you're prepared to
share your stuff with us, which would be highly unusual, I would
have thought.
Ms Lankin:
You can have everything I have.
Mrs Sandra
Pupatello (Windsor West): I guess my question then is
that as Chair of the committee you wouldn't be operating from the
viewpoint of a caucus or other, so if you've referred to section
11, could we then have a copy of your section 11? You wouldn't be
operating from the Conservative caucus package; you're the Chair
of the committee.
The Chair:
Ms Pupatello, I have a binder put in front of me and if that
includes documents from more than one source, then I obviously
didn't control that. So if Mr Sampson is suggesting that is in
fact something that has been prepared by other than the
ministry-
Mrs
Pupatello: But, Chair, apparently you have-
The Chair:
Yes, Ms Pupatello, and you know, when the Liberal Chair sits
here, he would have access to the things that the Liberal caucus
has prepared.
Mrs
Pupatello: So were you suggesting just a moment ago that
what you were going to offer us is a Conservative Party
document?
The Chair:
No, Ms Pupatello. If I erred in suggesting that the way it's been
reformatted there in this binder is not specifically what you
have there, I would invite-obviously, as we go through the
detailed clause-by-clause, if there are any definitions that you
need, they will be provided.
Mr
Sampson: I'll try one more time.
The Chair:
Sure. I'm sorry I mentioned this.
Mr
Sampson: To the extent the document in front of us, or
portions of it, is a document that's helpful to better understand
the bill, I don't see any problems to the extent that we could
provide that. To the extent that there are comments or notes
prepared for the purposes of the government caucus members,
clearly I don't think you're expecting us to share that, unless
of course you're prepared to reciprocate. We'd be happy to see
it. But to the extent it's an easier document and components of
it are an easier document to understand the bill, I don't see any
problems with us doing that.
I can't commit to
delivering that document to you right today, but if it's a better
explanation of the bill that could be shared with other caucuses,
I don't see any problem with that. To the extent it's information
prepared by the PC caucus for the PC caucus review, I think it
would be highly unusual
for us to be sharing that with your caucus. I don't know that I
recall it ever being done, but if you want to set that precedent,
we'd be prepared to take a look at your briefing material as
well.
Mr Bob Wood (London
West): Mr Chair, maybe we can offer some closure to
this. This was a document prepared in part by the PC caucus.
We're not going to share it with the other caucuses.
Interjections.
The Chair:
Thank you. I have apologized for raising it. In the future, I'll
make sure there are better annotations on the tabs, but obviously
as we go through this I expect all members to have their
questions answered. I would hope that the ministry, if there are
any definitions or any other work that your caucuses have not
been able to do so far, gets the information here. My apologies
for taking us off on that tangent.
Mrs
McLeod: Mr Chair, maybe this is a time when we haven't
had any preliminary discussion and we haven't had any second
reading debate so we haven't established in any kind of public
format our procedure for this committee and our intentions in
sitting down in what is still a somewhat unusual procedure.
My understanding of the
government's interest in going to the committee hearings without
having had second reading debate was that we would attempt to
really come to some understanding as to how to make this a bill
which is the best possible bill that potentially has the support
of all parties.
As was addressed by
ministry staff at the outset, this is a very complex piece of
legislation. Governments are more inclined not to deal with it
than to deal with it because of the complexity. I'm not going to
speak for Ms Lankin, although we've had personal discussions, but
I believe our caucus would share the belief that it is important
to have health privacy legislation.
We have some real concerns
with this bill and we've been very public about our concerns.
We'll be very public about raising our concerns. Our hope would
be that there can be a real dialogue about what the intent is in
putting forward some of those areas where we have a concern, and
if we're not satisfied with the answers we may not be supportive
of the bill. But at least at the outset it was to be an attempt
on the part of all three parties to share.
I think this gives us an
unfortunate start. I have only one-
The Chair:
Mrs McLeod, I've got to cut you off. I've made the undertaking. I
expect you to have your questions answered. The fact that the
government caucus would have prepared the bill in another
format-I have no doubts your caucus goes through it and the NDP
does as well.
In terms of getting us
through this morning, Mr Jackson and his associates are here to
give the kind of definition. From that I think will flow any
number of things. Certainly, as I've said twice now, I will
expect you to have full access to all the information. I would
hope something as simple as reformatting a page is not seen as an
impediment to allowing us to get through clause-by-clause here.
As I looked around the room, there seemed to be a lot of people
on both sides trying to figure out what Mr Jackson was referring
to when he said page 4 and then went on through his notes. I
simply leafed through this binder and saw a different format that
seemed to be a clearer way of looking at it. Having said all of
that, it has exactly the same sections as are found in the
annotated version of the bill that is in your binder.
I'd like to see Mr Jackson
be allowed to proceed. When we're done all of that, I will
certainly put whatever pressure we have to put on to make sure
you have absolutely all the information you need to move through
this bill, because we all agree it is a very important
initiative.
Mrs
McLeod: It would have been so simple just to have
provided an easier format.
The Chair:
I showed up here and saw a binder, just as you did, and I don't
know what all is contained in there.
Ms Lankin:
I'm about to ask if we could take a quick five-minute break. I'm
tempted to ask what's at tab 12, but I won't do that. Mr O'Toole
has assured me he'll share tab 11 with my anyway, so we can do
that if we take a five-minute break. Is that possible?
The Chair:
Again, the first few sections of the bill are definitions and
things like that. I will be astounded if you find any surprises
in that. I would suggest that goes on coincidentally, if in fact
that's the only reason for suggesting a delay.
Ms Lankin:
No. I would like to take a five-minute break. I was joking about
everything else.
The Chair:
I beg your pardon. OK. The committee stands recessed for five
minutes.
The committee recessed
from 1138 to 1152.
The Chair:
I call the committee back to order. I think we've lost our
presenters.
Mr
Sampson: Chair, are you going to take questions now? For
the next half-hour, what's the game plan?
The Chair:
I am certainly in the hands of the committee members. If you
already have questions based on the presentation so far, I think
they would be in order.
Mrs
McLeod: I'd be comfortable with the ministry taking us
through clause-by-clause. The questions at this point really are
questions for clarification and understanding. We're not looking
to debate stuff, so I think we could work through
clause-by-clause and ask the questions, if anybody has questions,
along the way.
Mr
Sampson: So as we go, we'll do the questions. Is that
the idea?
Mrs
McLeod: I think that's the easiest way to do it.
Mr
Sampson: I just wanted clarification.
The Chair:
Mr Jackson, if you'd like to continue taking us through section
by section.
Mr
Jackson: Beginning with the purposes, section 1, page 4
of the act, part I sets out the purposes and definitions. The key
purposes are to protect privacy, confidentiality and security of
personal health information; to establish rules for the
collection, use, disclosure, retention and disposal of personal
health information; to protect individuals, whether living or deceased,
from unauthorized collection, use and disclosure; to facilitate
the exchange of personal health information for authorized
purposes; to control the collection, use and disclosure of an
individual's health number; to establish restrictions on
disclosure in proceedings with regard to quality-of-care
information.
Mrs
McLeod: I'm not sure whether you feel you need to give
us time to read it with you or whether you just want to
highlight, and then I'm assuming we may be able to pick up on
questions that we have without needing the kind of time-
Mr
Jackson: If you're comfortable with me highlighting for
you, we can highlight.
The Chair:
In the interests of time, Mr Jackson, I think if you would just
give the highlights. I expect the members have already digested
the bill once or twice.
Mr
Jackson: In the interests of time, then, I would skip
through some of the definitions. I would point you to the
definition of "registration information," because that shows up
later in the legislation.
Ms Lankin:
Which section?
Mr
Jackson: Registration information is defined in section
2.
Mrs
Pupatello: What page?
Ms Lankin:
Page 9.
Mrs
McLeod: This is just a curiosity question. One of the
things we've tried to do is cross-reference the bill to the
ministry's original consultation paper and to the response Ann
Cavoukian made to the ministry's consultation paper. I just
simply don't understand. In the list of definitions of who is a
"health information custodian," apparently originally the
Ministry of Consumer and Commercial Relations was listed as a
health information custodian and other ministries were not. The
privacy commissioner has said there needs to be a rationale for
who was included and who wasn't. As I look at the bill, none of
those are included and therefore there is no rationale. I'm
curious to know what happened between the-
Mr
Jackson: As you may be aware, this summer the Ministry
of Consumer and Commercial Relations was out consulting at the
same time as the Ministry of Health on a discussion document
around potential general privacy legislation. In part, it's a
reflection of those discussions, the specific work that's been
ongoing on personal health information. It's fair to say that the
work that went on in 1996 and 1997 included a broader range, in
part because there was not the anticipation of other legislation
in this area. Hence MCCR, in terms of the registration
information they would hold, was not envisaged to be captured in
this bill, because they also hold a range of other information,
but under the broader general bill.
As I say, I can't comment
on when or whether the other bill will proceed. That's a decision
that still requires to be made. However, that's the
background.
Mrs
McLeod: Can you give us an idea of in what context MCCR
would be a health information custodian, where they would be
holding health information?
Mr
Jackson: In that registration information is there. They
are also covered under other legislation for that registration
information.
Mrs
McLeod: That takes me to one other question on this
section on the registration information. It seems like very broad
registration information, because it includes electronic and
photographic images and any identification number for the
individual, other than the health number, which I assume included
driver's licence numbers and any information about the
individual's employment status. Is that consistent with
definitions of registration information under other acts,
including health acts, in the other provinces?
Mr
Jackson: We can confirm that for you. We'll confirm that
in terms of the definitions used in other jurisdictions.
Ms Lankin:
Just back to the health information custodian definition for a
moment, I'm assuming, perhaps incorrectly, that clause 14, which
is essentially the regulation-making power setting out others who
can be designated, is where a number of these other groups like
the ministries would end up being referred to, and/or are they
caught by a general provision of anyone who has health
information and we have to go back to what the definition of
health information is?
Mr
Jackson: No, we don't basically cover anyone who holds
health information. It's been crafted to respond to the health
sector, so it's personal health information in the health sector
and would include the Ministry of Health. The reg-making
authority in the act would provide the ability to add additional
custodians. In part, if an institution or a newly class of
institutions is introduced or if a new health profession is
established, that's the sort of provision that would allow us to
recognize an additional health information custodian.
1200
Ms Lankin:
Then at this point in time, and from your previous answer, we
don't know what the government's intention is with respect to
other ministries that may have some of the information that could
be determined to fit under personal health information.
Mr
Jackson: Insofar as the Ministry of Health is captured
under this legislation with regard to the ministry's role in
planning and management of health care, it has been structured in
a way that we are attempting to capture the health sector. As you
know, FIPPA and MFIPPA apply to government institutions. These
are specific rules for the health sector.
Ms Lankin:
Understood. My next question is also with respect to registration
information and the breadth of what is contained within that. I
appreciate that you are going to do a comparison of other
jurisdictions, but my question is a little more basic. Why have
you included, for example, information about an individual's
employment status? Why is that part of what the Ministry of
Health sees as relevant to registration information?
Mr
Jackson: In terms of registration information including
employment status, we will need to clarify and we can provide you
an answer in writing on that.
Mr Sampson: I want you to help me
out if you can with how broadly you see the definition of "health
information custodian." How broadly do you see that definition?
I'll give you a couple of examples and maybe you could comment on
those particular examples.
If you go to a fitness
club, public or private, it generally asks for a lot of health
information to determine whether or not you should be using
certain pieces of machinery etc. When your son or daughter
participates in hockey or any sort of athletic group, OHIP
numbers are provided to the coaches so they can deal with
emergencies should they arise, and sometimes health information
is provided. Are these individuals captured under the definition
of health information custodian?
Mr
Jackson: No, they wouldn't be covered. For example, if a
fitness centre employed a nurse-I can't think of many examples of
where this would apply-or employed a registered health
professional or an unregistered health professional, as an
individual, they would be captured as custodians.
In terms of the general
questions that a fitness trainer would ask, no, they would not be
covered as health information custodians, because they typically
don't extensively collect, use and disclose personal health
information, and they are not in the health sector.
Mr
Sampson: Is that the exclusion, then? Where is that
exclusion seen in the bill? Can you refer me to the section that
would exclude them?
Mr
Jackson: It's done by virtue of they are not included in
the definition of health information custodian. If they are not
included in the definition of health information custodian-and a
large number of agencies are not included in that definition-then
they are excluded from the application of the bill.
Ms Lankin:
I'm sorry, one more question with respect to health information
custodian. The reference to "community health program or
service"-I didn't look back-is that defined anywhere?
Mr
Jackson: It is currently not defined. The purpose of its
inclusion is to capture those sorts of unregulated health
professionals who are currently in place where there is not a
legislated way to refer to them. So it's a definitional
challenge.
Ms Lankin:
I agree. The definitional challenge that I have is, is it broad
enough to include community services that are currently under the
Ministry of Community and Social Services, as opposed to the
Ministry of Health?
As you know, depending on
the age of the individual receiving services and/or treatment,
these services are funded and exist in different places within
our community. Actually, in my mind I'm coming back to our
discussion under Brian's Law before, where there was a
requirement to share information around a community order. A
number of the community players in that sector will be health,
but some of them in fact will be Comsoc.
There are specific
references here to employment support situations under ODSP,
which is different, but there are also employment supports under
Comsoc that might be part of a CTO, for example. I just want to
make sure we actually are capturing those groups and that by
using community health service we're not limiting ourselves to
only Ministry of Health-funded community services.
The Chair:
Thank you. Mrs Pupatello.
Mrs
Pupatello: Could you clarify that question we asked with
regard to comparing registration information, not necessarily
across other jurisdictions but across ministries within the
Ontario government? How does this list of what can be included in
registration information compare with, say, the Ministry of
Transportation?
Mr
Jackson: Certainly in terms of providing information to
the committee, an assessment of what's currently there in terms
of registration information and how it's defined, we can pull
that together.
Mrs
Pupatello: I just didn't hear your response to Ms
Lankin's question with regard to the purpose for including
employment status on that list.
Mr
Jackson: What I'd said is that we committed to get back
in writing.
The Chair:
Thank you. Mr Barrett.
Mr Toby Barrett
(Haldimand-Norfolk-Brant): Further to the definition of
a health information custodian, if an organization is conducting
research or data analysis-for example, surveying mental health
clients-the agents or perhaps students doing this research would
be classified as health information custodians? They would have
access to the information?
Mr
Jackson: Somebody who is basically contracted with a
health information custodian or is acting under the direction of
a health information custodian-for example, if that research were
being undertaken by a hospital that included students to do
survey work-would not be able to undertake any of the duties or
any of the functions of a regulated health information custodian
other than those that would be allowed for the custodian. So the
rule is on the custodian. If they are bringing on a student to
assist, they are still governed by the rules that would apply to
the custodian.
Mr
Barrett: So a student would have access to the
information under the part of their responsibilities to do
surveys.
Mr
Jackson: Insofar as it complied with the legislation as
stipulated and it complied with the appropriate uses and
appropriate protections and measures that would be required to be
in place.
Mr
Barrett: I also understand there is research with
respect to mental health clients where they are using consumers,
mental health consumer survivors themselves, to conduct these
instruments, to conduct these questions, so they are also
entrusted with this mental health information of their fellow
consumers of the service. They would be classified the same as
the students?
Mr
Jackson: Where, for example, you may have a psychiatric
survivors' group who are, for the benefit of their own ongoing
treatment or as part of their ongoing lives, engaged in that
discussion-they are individuals; they are not regulated health
professionals-they are not covered under this legislation. They would be
basically conducting their discussions as one individual to
another. Should they engage in research, they would not be
covered by the research rules that apply here unless somebody in
the health sector defined as a custodian had contracted them to
do so. It's not attempting to capture all discussions of personal
health information between free individuals. It's aimed largely
at the formal health sector per se.
Mr
Sampson: I think there has been reference already to the
fact that you've tried to design this bill as something that's
caught the correct balance-I think you said the "right" balance,
and I'm going to use the word "correct" balance-between the need
for information to be shared for social purposes and the need for
information to remain confidential.
Perhaps as you go through
the clause-by-clause you could let us know where you believe the
bill has been structured to help readjust that balance should
that balance need to be readjusted, because as I reflect upon
Gilbert's dissertation of the history here, what comes to my mind
is that perhaps legislation has been trying to play catch-up to
the realities of the way information is stored and shared and
assembled and processed, let alone dealt with in a general
sense.
1210
I think it's appropriate to
make sure that we do our best as legislators to draft a bill that
can be somewhat flexible to changes in the use of medical
information or whatever as medical technology and medical science
move ahead. So if you can tell us this is where, for instance,
we're able to be flexible to meet whatever future demands should
be on either the sharing of information or the plan to keep it
confidential, just as a general comment-I don't know if you need
to do that right now, but as you go through and say, for
instance, "Here's a spot where that balance could be adjusted by
future governments as necessary," or where we might have to look
at adjusting it.
Mr Sharpe:
I don't know if it's even so much a matter of balance. The
history I gave reflected on the fact that we traditionally looked
at hard copy. The Public Hospitals Act talked about medical
records and the Mental Health Act talked about clinical records.
We worried in the 1970s about the situation where a patient
consents to disclose a psychiatric record but the law does not
reach into that secondary and that tertiary disclosure. How do we
protect the integrity of that very sensitive information which is
now out of the control and hands of the institution that compiled
it and the patient who consented to its release?
In crafting this, we had
the difficult task of trying to determine where to cast the net,
and do we try to follow it as health information, wherever it
might be-in a health club, in an insurance company, wherever-or
is this a law primarily aimed at the health care system? They're
the principal custodian of the information. They craft it and all
the access rights and others would pertain to them. Then you have
some provision which we have dealing with recipients of
information, and they have obligations on them about how they
have to deal with the information they've obtained properly but
they don't become, in fact, custodians of it.
That's where, as we examine
the details of the legislation, there will be these ongoing
threaded questions of, what about other ministries? There are
jails that have physicians and there are records crafted there:
Comsoc, of course, many examples-children's mental health centres
and so on captured in some cases-other Comsoc information that
might be health-related that might be shared in the interests of
eligibility and benefits that may not be captured by this law,
and the provisions of Comsoc's bills may not properly or
consistently apply.
The ultimate thrust, I
suppose, is if the net has been cast sufficiently broad, and I
include in that that in jails and in Comsoc facilities you have
regulated health professionals who have their own legislated RHPA
requirements professionally on them; what are the other
safeguards necessary to ensure that that legislation, which is
still essentially health care information about us, is
protected?
Mr
Jackson: Part of the reason we took the form of
introduction we did to outline some of the other privacy
initiatives is that the temptation can be quite easily to make a
bill which is basically designed for the health sector respond to
any perceived flaws that exist in every other sector. That's a
challenge about where you draw the boundary in crafting a piece
of legislation with specific goals regarding the health
sector.
There are questions that I
think committee may want to ask the federal privacy commissioner
when the commissioner presents regarding the broader protections.
For this, the purpose of the definition of health information
custodian was to try and circumscribe what are those facilities,
programs, organizations, individuals, the role in health
care-managing health care, planning health care-that draw a box
around this legislative exercise. So the definition section is a
very important section. It spells out the boundaries of this act.
Beyond the boundaries of this act there's other legislation that
would apply. There's other legislation and there may be holes in
other areas, but this is almost a core area of debate.
Mrs
McLeod: I agree it is a core area of debate and it's one
of the reasons why the answers to the questions "why" are
genuinely needed for understanding, as opposed to being a
challenging question.
I have a question about
what it is and why it is with the exception to the definition of
"health information custodian." In this case I'm particularly
looking at subsection (2)-I'm losing track of what section it is,
but it's page 10 of the printed bill. It says, "A person
described in one of paragraphs 1, 5, 6, 12 and 13 of the
definition ... is not a health information custodian with respect
to personal health information of which the person has
knowledge...." Basically it says somebody who has access to
health information as an employee of somebody who is a health
information custodian is not under the provisions of this act, as
I understand it. My question is, since employees will have access to highly
sensitive information, including somebody who's doing the
note-taking, the electronic entries for a physician-they're not
bound-what protection is there that those people are not in a
position to disclose without any consequence at all?
Ms Auksi:
I think this may be dealing with several different aspects of the
bill. This particular provision is not, I think, the one that
really goes to the question that you've asked. When it's an
employee who is working in assisting in providing health care
under the direction of the health information custodian, that
employee, certainly in regard to those activities, is covered by
this bill. There are responsibilities of a custodian and
responsibilities of the employee that are set out, I think, in a
part Phil will come to.
There's the other issue,
though-and I think this has been discussed at times, and I'm
guessing this may be what's behind your question-that employee
records per se are not covered by this bill. So if, for example,
there happens to be in the administrative records, the personnel
records of an employee working in a hospital, some information
about their sick days, something like that, that would not be
covered in this bill any more because this is not intended to
address that broader issue, because certainly there are employee
records in organizations and companies that have nothing to do
with the health system. That kind of record would be left to a
more general privacy approach rather than this. Different issues
are raised than are raised in the health care delivery
context.
Mr
Jackson: Also in your answer, if you go to the
definition of "custodian," you will see it's, "A service provider
within the meaning of the Long-Term Care Act," or it's a
facility. Or as long-term care it would basically be the service
provider in the meaning of the Long-Term Care Act, the service
provider with the Child and Family Services Act or a hospital
within the meaning of the Public Hospitals Act. So the
institution itself is the custodian; it's an institutional
custodian. Insofar as that exists, there are obligations on the
institution and there are obligations on the individual
providers. Specifically when we go through section by section we
talk to the issue of those who are operating under the agency of
a custodian.
Mrs
McLeod: So employees in those settings are covered by
the provisions of the act. I guess part of my question was in the
areas in which employees are exempted from the provisions of the
act. My example was a bad one, I acknowledge, but if we go back
to the sections where it is carried, are you satisfied that there
is not an opportunity for the disclosure of highly sensitive
personal information by employees who would be operating under
one of these exempted classes under paragraphs 1, 5, 6, 12 and
13? If I'm misreading that, please tell me. There are several
classes of the gathering of health information where the health
information custodian doing the gathering and collecting of that
information is under the provisions of the act, but as I read
that clause, the employee of that custodian is not. I guess my
question is, does that not still open up the possibility of
disclosure of sensitive information? And if it doesn't, why is
the exemption there?
1220
Ms Auksi:
I'm not absolutely sure I understand what you're referring to,
but if you're referring to the page 11 provision that you were
talking about before-
Mrs
McLeod: Yes, it's provision 2: a person described in one
of those five clauses "is not a health information custodian with
respect to personal health information of which the person has
knowledge as a result of or in connection with being employed by
or in the service of another health information custodian."
Ms Auksi:
OK, I understand what you're referring to now, yes. Sorry, could
you give me the section number?
Mrs
McLeod: Sure. It's page 10, subsection 2. I've lost
track of what section it is because this is the unwieldy section
that has a thousand subsections and sub-subsections.
Ms Auksi:
OK. The intent here is to deal with-for example, let's say
someone is a physician, works in a hospital and also has a
private practice. The physician in the private practice part of
his work would be the custodian of that information; working in
the hospital, it's the hospital that's the custodian. That's
really the situation now. This just attempts to set it out more
explicitly than it is in existing legislation.
Mr
Jackson: If you go to subsection 16(1), which is on page
19, it deals specifically with the issue of employees-"For the
purposes of this act, a person who is employed by or in the
service of a health information custodian"-and goes on to define
the-
Mrs
McLeod: But the exemption is given under the definition,
so that the people who are exempted under those five clauses are
not covered by the section that you've just referred me to as
16(1). I'm just trying to get at the potential for the disclosure
of sensitive information to employees under those five
circumstances.
The Chair:
I think, Mr Jackson, if I may, the confusion may be about the
difference between being a custodian and someone who just happens
to have access to information. Perhaps if you could elaborate on
that distinction-
Mrs
McLeod: No, it's the employee of somebody who is a
health information custodian. In five categories their employees
are exempt from the provisions of the act. Every other employee
of a health information custodian, whether it's a hospital or a
practitioner-well, no, not a practitioner, because of section
1-
The Chair:
I took from the answer we were given earlier, though, that
because there was a higher authority that was still covered, you
were not exempt as an employee-
Mrs
McLeod: I understand that the employer is the custodian
and the employer is responsible.
Mr Sharpe:
Right. My reading of this is that subsection (2) would exempt
them from being custodians.
Mrs
McLeod: The employees are exempted from being
custodians, right.
Mr Sharpe:
Yes, the employees would not be themselves custodians.
Mr Jackson: To be a custodian
would mean, for example, you have to have a written policy around
how you dispose of records, so the organization would be covered
under that. The employee would be captured under 16(1) for the
purposes that they're employed in a health care setting.
Mrs
McLeod: Let me try to make it straightforward so that I
can try and understand it. So if an employee of one of the health
information custodians under one of these five sections discloses
sensitive personal health information, what you're saying to me
is that at the end of the day the responsibility lies with the
custodian and any penalty is levied against the custodian, as
opposed to the employee.
Mr
Jackson: Yes.
Mrs
McLeod: And you deliberately put in those five sections
as exemptions, whereas in the other section you referred me to
the employee is also responsible for maintaining the
confidentiality of the information. Why did you exempt the
employee in those five areas? Is there a reason for that?
Mr
Jackson: They're not exempted.
Mrs
McLeod: Well, they're treated differently.
Mr
Jackson: They're exempted from the definition.
Ms Lankin:
Mr Chair, there are a couple of points that I want to raise that
are stylistic, but let me begin with this one. The definition of
all employees of health care information custodians is set out on
page 8 near the top. Section 16 that you allude to refers back to
that definition, so those people do have restrictions on them
with respect to what they can and can't disclose and all of
that.
Subsection 2(2) indicates
that those people, where there's a dual role in some cases, are
not custodians themselves. I think it would make a lot more sense
if 2(2) were actually included as a subpart of the definition of
a person who is employed by a health service. It's sitting out on
its own; it's very hard to relate back and understand.
Mr
Jackson: I think 2(2), taking that approach, would
clarify that so there's absolutely no doubt that they're
captured, and that's the intent.
Ms Lankin:
The other again is stylistic. I'm sorry, but I don't understand
why some definitions end up further on in the act and not up
front. For example, the definition of "quality of care
information," or quality assurance information, is set out in
part VII of the act, not in the definitions section. Immediately
you get into application, and in application it says it applies
to health information and quality assurance. I don't understand
that, and maybe you could take a look at some of those things
because, one of the problems with understanding complex
legislation is the way in which you get the information, you
know, the big stuff and then you move down, and when you get the
detailed stuff, the big stuff all of a sudden popping up later,
it changes your reading of the whole act.
Mr
Jackson: In terms of defining quality-of-care
information, I think it could be included in the earlier section
as part of definitions.
Ms Lankin:
Is there a reason?
Mr Sharpe:
It's simply a matter that, in working with the various
draftspeople on the bill, some sections were more or less
self-contained and they thought it was best to say-and I've seen
this from time to time-"These definitions really only apply in
this part, so it might be best to have it a complete code in this
part so people don't have to keep going back to the beginning to
see what we're talking about, because the notion of
quality-of-care information doesn't apply anywhere else." It is
stylistic and it's designed to be more user-friendly, but for
others it may be more confusing.
Mr Wood:
In the definition of "person who is employed by or in the service
of a health information custodian," do you think you include an
independent contractor working for a custodian. If that is
included, could you share with me how the draft statute does
that?
Mr
Jackson: Yes. There are specific provisions that address
somebody who is contracted to provide services for a custodian.
If it's unclear in the language, then certainly it needs to be
clarified, but it is captured.
Mr Wood:
Could you share with me where it's captured?
Mr
Jackson: It's under the direction or supervision,
(3).
Mr Wood:
That goes with the definition of independent contractor, of
course, but certainly not under supervision. An independent
contractor is not under the supervision of the person they're
contracting.
Mr
Jackson: If a facility contracts for the purposes of
care, they will be covered under this. If a health information
custodian contracts with a third party in relation to the
responsibilities of that custodian with regard to health care,
they will be captured. Insofar as that is not clear, I take your
point and perhaps it is one where we need to look at the
linguistic-
Mr Wood:
I'm wondering if you should simply include independent
contractor, if that's what you're trying to do, because there's
clearly a specific legal definition of what an independent
contractor is, and some of the things you're talking about there
exclude you from the definition of independent contractors.
Mr Sharpe:
It's a legal notion of whether it's off-service or for-services,
all of the history around that that comes under the contract and
commercial law area. I think there was an attempt to capture it
by saying "employed by or in the service of," that "service of"
would be broad enough. But it certainly would be helpful to
clarify that that does include independent contractors as well.
They may not be "supervised by."
Mr Wood: I
would invite you to consider that.
The Chair:
Are there any other questions on the definitions, just while
we're on this section?
It's now 12:30. The privacy
commissioner has indicated she could move her appearance up to
1:45. So with the indulgence of the committee, I'm going to ask
whether the Ministry of Health folks could attend, all of you or
some of you, during the privacy commissioner's presentation and
make yourselves available for further questioning at the end of her presentation no
later than 3:45 this afternoon. If that would meet your schedule,
we would be most grateful, because I'm sure the members have many
more questions they'd like to pose to you.
With that, the committee
stands recessed until 1:45.
The committee recessed
from 1230 to 1349.
INFORMATION AND PRIVACY COMMISSIONER/ONTARIO
The Chair:
Good afternoon. I'll call the committee back to order. This
afternoon we are pleased to have with us Ms Ann Cavoukian, the
Information and Privacy Commissioner. I'm told she's joined by-I
think I've seen at least one of her colleagues-Mr Beamish. I
wonder if they could come forward to the witness table. We have
up to two hours for your presentation and questions and answers,
as the committee members see fit. Thank you for joining us.
Dr Ann
Cavoukian: Thank you, Mr Chair. Good afternoon, ladies
and gentlemen. I'm very pleased to have this opportunity to
address the committee today, and if I could kindly ask you to
hold your questions until I complete my prepared statement, I
hope to get a lot of information out.
Let me start by saying
upfront that I strongly support the government's introduction of
this much-needed legislation and I'm pleased that my office has
been identified as the oversight agency.
My office has been
advocating the need for health information privacy legislation
for many years, since the inception of our office in 1987, but
we're certainly not alone in that regard. Members of the public,
health care providers and other stakeholders have been waiting
for the introduction of this type of legislation since Justice
Krever's report of the royal commission on confidentiality of
health information in 1980. That's over 20 years ago. Since that
time, there have been repeated attempts to get a bill introduced.
We came quite close on several occasions but never as close as we
are today.
Ladies and gentlemen, the
need for this legislation has never been greater, especially with
the increasing electronic exchanges of health information. The
old, paper-based world of health records will gradually disappear
over time and the new world of electronic records will require
new rules specifically crafted for this new medium.
I offer a caution. The
committee will no doubt hear from people who will urge you to
scrap the bill. I ask that you be skeptical of these calls and
ask them the following question: what protections are in place
right now without a bill? What privacy protection will there be
for personal health information in the interim until the next and
possibly again failed attempt to introduce new legislation? In
other words, what happens in the meantime? I think this is a
critical question.
I'll tell you what will
happen: your privacy will get further eroded and your health
information will get subjected to further abuse.
None of this takes place in
a vacuum, as you know. You have to take a look at the existing
state of affairs. What is the status quo? The status quo is that
there are no legislated safeguards in place right now. It's wide
open and your health information is now being used without your
consent in ways that most people are completely unaware of. There
are no controls in place now, and we can have no influence in
such a world. Electronic health information networks are being
built as we speak, without any guidance or control. So I urge
you, please, not to scrap this bill but to improve it.
In my 14 years of
experience with this agency, I personally witnessed first hand
the repeated but failed attempts to introduce this type of
legislation. It's a very difficult exercise. Whenever you're
trying to balance so many competing interests, you will
invariably be confronted with the problems and the issues that
arise again and again. But we need this legislation now, more
than ever.
I've also had numerous
discussions with people in the health field, with the ministry,
including Mike Connolly, for example. He's the chief information
officer of the government health sector, who also heads the smart
systems for health, a project which I strongly support in its
dogged determination to try to protect privacy. Mike has
repeatedly emphasized the need for increased diligence in the
protection of privacy as the health care field moves further and
further into the information age. Quite frankly, he's worried
about the growing risks for health information, and he witnesses
it first hand.
So we need health
information privacy legislation. We need it now. Please, let's do
whatever we have to do to bring in legislative protections to
ensure the privacy and confidentiality of health information.
Again, this speaks in favour of fixing this decidedly imperfect
bill rather than scrapping it.
Now, to be clear, this bill
needs a lot of work, no question. I would not suggest otherwise.
To that end, I offer the resources of my office to work with the
Ministry of Health until the concerns raised about the bill have
been addressed. We are very strongly committed to working with
the ministry to make this a truly privacy protective bill.
I urge you to take the
necessary steps to ensure that the bill is improved, that its
privacy provisions are strengthened and that a superior bill is
reported back to the House so that all Ontarians may have the
benefits of privacy protection for their health information.
Before I review the three
major areas where we have encountered difficulty, let me first
touch on another matter involving the federal statute, Bill C-6,
which I believe you're all very familiar with. I would ask the
committee, in your review of the bill, to be mindful of the new
federal privacy legislation, the Personal Information Protection
and Electronic Documents Act, commonly referred to as Bill C-6. I
understand you will be hearing from the federal privacy
commissioner tomorrow, who can certainly speak to this matter
much better than I. But I should point out that unless Ontario's
health privacy bill is
deemed to be substantially similar to the federal law, that part
of the health care sector which is engaged in commercial activity
could potentially end up being subject to the federal legislation
instead of this bill, which I think would not be a particularly
desirable outcome given that it could create a great deal of
confusion and uncertainty on the part of both health care
providers and the public.
C-6, as you know, is based
on a CSA Model Code for the Protection of Personal Information.
The CSA code consists of a set of privacy principles, generally
referred to as "fair information practices," which form the
foundation of all privacy codes and laws throughout the world.
The CSA code is attached as a schedule of the federal
legislation.
While in some respects Bill
159 is arguably better than the federal legislation, it has a
number of very serious weaknesses and it certainly doesn't model
the CSA code. Wherever possible, the committee should try to
ensure that the bill meets the minimum requirements set out in
the federal legislation so that it can be deemed to be
substantially similar.
One other issue I'm going
to raise briefly is the range of health information custodians
who will be covered by this legislation and those who will not.
There are a number of organizations that collect, use and
disclose health information that are not included in the list of
health information custodians, such as insurance companies and
employers. However, it is our understanding that the government
will be introducing broad private sector privacy legislation that
will apply to these other custodians of personal health
information. That's how they will be caught. As long as such
private sector legislation is put into place in a timely manner,
the narrow scope of the existing health bill is not as great a
concern to my office. However, if that's not the case, then
certainly those organizations should be included in the scope of
this legislation.
Let me now turn to my major
concerns with this bill. My comments and our written submission
were prepared with three primary goals in mind: (1) to enhance
the privacy protection provided by this legislation; (2) to
promote harmonization of this law with the federal privacy law
and other provincial health information privacy laws in Canada,
which I will describe briefly; and (3) to facilitate the
implementation and enforcement of this legislation.
As the body which will
eventually be responsible for oversight and enforcement of this
bill, I believe there are a number of key areas where the
legislation must absolutely be strengthened.
Mrs
McLeod: You mentioned your written submission. Is that
available for the committee?
Dr
Cavoukian: We will be distributing it right after my
statement. Yes, absolutely.
The single greatest area of
concern has to do with the broad disclosures of personal health
information that are permitted without the consent of the
individual, particularly for purposes related to the management
of the health care system.
Another concern relates to
the broad regulation-making power provided by the legislation
which could fundamentally alter the very operation of the
legislation, placing serious constraints on the rights of
individuals. This to me is totally unacceptable.
The third major area of
concern is the lack of explicit powers for my office to conduct
investigations into privacy matters and to issue final and
binding orders. Without these we can make no assurances as to the
protection of privacy. Such powers are critical to the effective
and efficient oversight of the legislation and are much needed if
we wish to have public confidence in the system.
I will limit my comments to
these three areas. However, please note that all of our
recommendations are presented in great detail in the written
submission which you will be given shortly and they follow the
order in which they appear in the legislation.
Turning to perhaps the most
glaring area in need of attention, let me review the broad
disclosures of personal health information that are permitted
without the consent of the individual. Not only is this a major
concern for my office but also for privacy advocates and the
public at large. As well, the Ministry of Health itself has
acknowledged problems in this area and the need for
narrowing.
One of the basic premises
of this legislation, generally speaking, is that the consent of
the individual should be obtained before personal health
information is disclosed. However, the bill contains numerous
provisions for the use and disclosure of personal information for
a wide array of purposes without any consent from the individual.
In fact, under this bill, individuals have relatively little
control over the collection, use and disclosure of their personal
health information.
The notion of having
control over the uses of your own information is fundamental to
privacy. Privacy revolves around control, personal control, over
the use and circulation of your information. This is often
referred to as informational self-determination, that the
individual is the one to determine the fate of his or her
information. Bill 159 is seriously lacking in this vitally
important area. One example: individuals have no ability to
prohibit their health information from being made available to
others over computerized networks. In contrast, under comparable
legislation that recently came into force in Alberta, custodians
are required to obtain consent before disclosing health
information via electronic means.
1400
Under Saskatchewan's
yet-to-be-proclaimed health information privacy law, which has
been passed, individuals may prohibit a custodian from making
their health information available over government-sponsored
health networks, and where it is made available over the network,
individuals can then prohibit the disclosure of all or parts of
their records. Again, control is maintained.
However, under Ontario's
bill individuals have no way in which to prevent their health
information from being shared freely among health care providers.
In contrast, under comparable legislation in the province of
Manitoba, a trustee
may disclose personal health information to a person who is
providing health care unless the individual has instructed the
trustee not to make the disclosure. They can do that. This is
called the lockbox provision, which you may have heard about and
which I would be glad to discuss with you later if time
permits.
Even the United States, a
country which has strongly resisted both national and
international pressures to enact privacy laws, has recently
passed regulations for health information under the Health
Insurance Portability and Accountability Act which require
providers to obtain consent for routine uses and disclosures of
personal health information such as treatment, payment and health
care operations. This was surprising even to me, and very
pleasantly so.
While individuals may have
some concerns about the free flow of their personal information
among the health care community, they are even more concerned
about the use and disclosure of their health information for
secondary purposes. These are uses of their information, not only
for which they haven't given consent but in ways that they have
absolutely no knowledge of. It's just out there.
The public is also very
concerned about the potential for the government to have control
over their health information. For example, under this bill the
government could direct health custodians to disclose any
personal health information to a third party for a wide range of
purposes related to the management of the health system. This
could be practically anything. It's wide open and it's far too
sweeping a power, in our view.
While we understand that
some directed disclosures are currently permitted under different
pieces of existing legislation, our review suggests that the
disclosures that are contemplated under this bill go well beyond
what even currently exists. So it's expanding the existing
directed disclosures, extending the government's reach into a
patient's file, into his or her very chart with their medical
information. Think about it. Think about your own medical records
and if you would like that to take place.
What's even worse is that
there are virtually no limits on the information a custodian may
be directed to disclose and in almost all cases no power for the
commissioner to oversee any of these types of directed
disclosures that would fall well beyond our oversight
capabilities.
We see no convincing
evidence from the ministry that it requires these broad powers in
order to collect the information needed for planning and
administrative purposes. Added to this is the fact that there is
no transparency in this process. The public is completely in the
dark about existing directed disclosures, let alone the expanded
ones. There's nothing in the legislation that I believe will
remedy this. I repeat that this is completely unacceptable. If
the directed disclosure provisions are not eliminated from the
bill, then we recommend that any remaining directed disclosures
be subject to the review of my office, not just the directed
disclosures related to non-funded health services and programs.
What's not funded? Hardly anything. So basically we would have no
oversight over directed disclosures.
In addition, all
disclosures, including directed disclosures, should be subject to
the general limiting principles in the legislation such as the
requirement to preferably disclose anonymized or
psuedo-anonymized health information whenever possible. We've
also recommended that the legislation include some safeguards for
anonymous health information to ensure that through advances in
data matching processes, the once anonymous individual could not
later be re-identified. We urge the committee to carefully review
each listed disclosure and probe thoroughly with ministry
officials to ensure that it's necessary and warrants the
elimination of a basic privacy right.
Let me now turn to
regulation-making power. The extent to which this legislation
creates regulation-making power is an area of great concern to my
office and one that requires serious amendment. We understand
that some matters must be left to regulations, of course. It's
neither practical nor desirable to have every minute detail
included in the body of the legislation. However, a review
indicates that at almost every key decision-making point, the
bill includes the ability to deviate from the established rules
by way of regulation. In almost every part of the legislation,
key issues are left to be addressed in the regulations, leaving
far too much to be decided at a later date in a non-public forum.
These regulations could have a fundamental impact on the very
operation of the legislation and the privacy protections and
individual rights that it provides.
I have a list of these; I'm
going to read just a few of them because they're surprising.
Subsection 68(13) states that the commissioner must conduct a
review of a complaint in accordance with the procedure to be
prescribed later by regulation. This is unthinkable to my office;
I've never heard of this before. Why should a third party dictate
how my office, an independent office, conducts its reviews?
Surely that would have the effect of interfering with the
independence of my office and the ability for us to impartially
oversee this legislation. It's totally unacceptable; it's got to
come out.
Subsection 25(1) requires a
custodian who uses or discloses health information to provide the
individual with information about the uses and disclosures that
the custodian expects to make-this is a good thing; we applaud
that-but only in the circumstances prescribed by the regs. Why
would you leave this to the regs? It's far too important an area
and you should address this right in the body of the legislation
as other privacy laws do in other provinces.
Finally, clauses (d) and
(e) in section 44 provide reg-making power to exclude certain
types of health information and information held by certain
health information custodians from this part of the act which
provides individuals with a general right of access and
correction of their own health information. It doesn't make any
sense. It would narrow the right of access and correction
in a way that isn't
even identified here in the legislation; it would come later in
the regulations. It's not accessible.
I could read on and on-I
won't. You can read this later at your pleasure.
Overall the proposed
legislation provides the Lieutenant Governor in Council with the
power to make regulations in 30 areas-again, far too many. Since
this reg-making-power process is not transparent to the public,
the proposed number and scope of the regulations are unacceptable
and we believe should be narrowed.
The final area I'll address
today is the powers of the commissioners or lack thereof.
Part XI, which sets out the
oversight and enforcement regime relating to personal health
information, raises a number of serious concerns for my office.
This part establishes the power of the commissioner to review
complaints under the legislation and to conduct inquiries into
complaints about access and correction.
The provisions of Bill 159
are totally inadequate and fail to provide Ontarians with a
robust oversight over their most sensitive personal
information.
I'd like to refer you to
the investigation I tabled last year into the disclosure of
personal information by the Province of Ontario Savings Office,
and the reason I do this is that investigation provided ample
evidence of the weaknesses of the current public sector oversight
mandate.
This same weak oversight
framework is essentially being replicated in Bill 159. We would
not have the powers necessary to conduct investigations. The
proposed legislation lacks strong and explicit powers to
investigate the complaints of citizens and issue orders where
personal information is being used or disclosed in breach of the
legislation.
Without the clear authority
to conduct an investigation and sufficient powers to gather the
necessary evidence, an oversight body cannot adequately assess
the extent to which custodians of health information are
complying with their responsibilities.
The public cannot be
confident that health custodians are being held accountable for
their information management practices as they must be. In the
case of the health care sector, the lack of public confidence in
a strong and independent oversight agency may be fatal.
Accordingly, I recommend
that the powers be amended so that the commissioner has the
ability to do the following:
Investigate complaints-this
is as basic as it gets. We need clear and explicit powers to
investigate all complaints.
The ability to review
decisions of custodians that relate to requests for the
correction of one's personal information-my office is currently
dealing with a case that is before us which will clearly
demonstrate the importance of having these decisions subject to
independent review by the commissioner. Under Bill 159, this type
of review would not be possible. My order in this matter should
be completed within about a month's time and I urge you to take a
look at it when it comes out.
We should also be able to
issue final and binding orders that are not appealable to the
courts, as is presently the case under the public sector laws. We
see no justification for introducing an additional level of
appeal with the inherent costs and invariable delay that this
would involve, particularly in light of our over 13 years of
experience under the public sector laws that clearly demonstrate
that this is not necessary. The system works very well.
1410
We should also have a
general power to conduct privacy audits, to ensure compliance
with any provision of the act.
Finally, there should be
the elimination of any provision which would interfere with our
ability to independently determine what procedures are most
effective in doing our job.
Without these powers, my
office will not be able to effectively carry out its mandate, and
many of the public's rights and protections provided under the
legislation will be virtually unenforceable, rendering them, in
my view, of very little value.
I would like to conclude by
reiterating two points. Yes, the legislation needs a lot of work,
but no, it is not so fundamentally flawed that we need to start
over again. My office is committed to working with the Ministry
of Health to make the necessary changes to make this truly a
privacy protection bill.
I should also point out
that getting the bill to this point in the legislative process
has been a major accomplishment not to be underestimated. The
hard work that has gone into it shouldn't be ignored.
I believe the health care
community, the public and other stakeholders have the will to
work with this bill and mould it into legislation that will meet
most of our needs. I doubt if you would ever be able to reach
100% consensus in this area but I think most of our issues can be
addressed.
The challenge before us is
to adequately protect this very sensitive information from
inappropriate and unauthorized collection, use and disclosure
while, under very limited and controlled circumstances and
without infringing on the individual's right to privacy, making
the necessary information available for purposes that can
potentially benefit us all.
I ask that you consider the
detailed recommendations that my office has made in our witness
submission, which will be distributed to the committee, that I
believe, if adopted, would indeed make this legislation workable
and much more privacy-protective.
Later this month, during
your public hearings, we will be submitting to the committee our
suggested draft language-exact, precise language-for the changes
we are seeking.
Thank you very much for
your attention. Please feel free to call upon me or my office to
assist in any way we can as this bill progresses through the
legislative process.
I'd like to introduce two
of my colleagues whom I will be asking to join me, and you can
direct your questions to any of us. I'd like to introduce my colleagues
Tom Mitchinson, who is my assistant commissioner, and Brian
Beamish, who is my director of policy and compliance, and I ask
that they join me now. We are at your disposal to answer
questions that you might have.
The Chair:
Thank you, Ms Cavoukian, and welcome to your colleagues. First up
we have Ms Pupatello.
Mrs
Pupatello: Thanks so much for the presentation you've
made to us. Can you give us some details about the lockbox part
of the legislation which was in the draft, which you had a
significant hand in preparing and advocating for with ministry
officials? Can you tell us what was in it and why it needs to be
put back in, in your view, as you've mentioned? Just give us some
details and perhaps a couple of examples of how it would work for
a patient or a client going through both a public health
institution and a private institution.
Dr
Cavoukian: The lockbox is a contentious area. From a
privacy protection point of view, we think it's essential that an
individual have the ability to prevent the disclosure of some
sensitive information that they feel they do not want shared with
other people in the health field or other fields.
The reason it's
contentious-and I have to say this in fairness to health care
providers-is that a physician might say to you, "We need access
to all information, all medical records of an individual. The
patient isn't in a position to determine what we need to properly
treat an existing condition. Something they think is irrelevant
may be relevant." I accept that. So individuals who choose to
place information in a lockbox would have to accept
responsibility for the decision they're making.
Having said that, an
example: let's say someone had an abortion at a very young
age-16, 18, whatever-and they're getting married anew and they're
going with their husband to visit their new physician on a joint
basis. For whatever reason, perhaps she doesn't want that
information disclosed. It's from her past, she thinks it's no
longer relevant and she wants to place that in a lockbox. It's
nobody's business. I feel the individual should have the right to
do that. The contentious part is that people in the health care
field feel that it might impact on the treatment she receives in
the here and now for an existing condition. So I think one places
information in a lockbox with the responsibility that you are
making a decision that may potentially have some impact on the
provision of health care services in the future, but you do that
knowingly.
Other jurisdictions allow
that because, again, the central tenet of privacy is that you
have control over the uses of your information and you should be
the one in a position to make those decisions.
Mrs
Pupatello: Maybe it's a technical side, but the actual
determination-it seems the OMA position, just at a glance-and I'm
sure we'll get more detail-is very supportive of this lockbox
concept other than they are the keepers of the lockbox. So, as
you say, you acknowledge that the physician's education is
critical to determine what should be and shouldn't be in there.
Where you differ then is that you feel the individual is
responsible for the content? I guess, technologically, is it even
reasonable to be discussing this? We can hardly get our doctors
to get on-line in many instances or have their files kept by
computer. A lot of historical data are in a format that you can't
put it in a lockbox unless you physically give everyone a
vault.
Dr
Cavoukian: I agree with that, Ms Pupatello. It's just in
the future, if you look forward a decade or two, more and more
information will be electronically retained and at that
point-this is very forward-looking. You're right; the past
historical archive data, forget it. But looking forward, at that
point you might wish to prevent, electronically, information from
being imparted. We feel that there should be some control for the
individual to do that.
Mrs
Pupatello: OK. Do you differentiate between the safety
of the health practitioner in what's been prevented from other
providers to know? There may be an illness or a disease that is
critical information for providers. Where do you draw that line,
then, in what's appropriate for health providers to have to know,
even in terms of how to give care, whether that's hepatitis C
issues, anything like that. You could essentially want to prevent
that information for employment purposes, but for health purposes
you need to have this available and how to be treated. How do you
determine all of that?
Dr
Cavoukian: Very good questions and they require a lot of
attention. I think the physician would have to be absolved from
responsibility or liability in certain cases if information was
necessary for him or her to effect treatment and can't because he
didn't have access to it. So we'd have to sort out all those
questions, but we can turn to other jurisdictions and statutes
that have been enacted in other jurisdictions and look at how
they're operating for some guidance.
Ms Lankin:
In fact, that was the first question that I wanted to touch on as
well and wondered if you could-perhaps it's in your written
notes, but if you could provide us with an overview of other
jurisdictions that have the lockbox, how it's used, and what the
effects have been in real terms. I don't know how long these
provisions have been in play. Is there any longitudinal study or
anything yet that we can look to?
Dr
Cavoukian: Unfortunately, Ms Lankin, the time frames are
very narrow. The Alberta bill just got proclaimed. It was half a
year ago; it just got proclaimed February 1. Saskatchewan is not
proclaimed yet. Manitoba has been proclaimed and operating for a
while. They have a lockbox but their experience with it is so
limited. We meet with our counterparts in the provinces once a
year and this year we'll be discussing it, but it hasn't even
been a full year since proclamation. The data are very limited,
so it's really hard to answer that question.
Ms Lankin:
So the struggle that we're going to have as a committee is
between what I see as a very basic, fundamental principle of
individual control over our own information, something as private
as health information, and the demands that we individually also place
on the health care system and health care providers for extensive
quality health care. To use a medical doctor as one provider at
this point in time-and I think we need to be careful that we're
looking at the impact on a full range of providers, not simply
medical doctors. But to use that as an example, and the work of
the College of Physicians and Surgeons, where many of the cases
of complaints that come forward from patients are, "We're not the
informed professional. You ought to have known. You ought to have
foreseen. You ought to have been in a position to advise me
differently or to have made appropriate treatment decisions or to
have helped me make better informed treatment decisions." There's
a real conflict in those two worlds of expectations that we as
individuals have: the right to our own privacy and our demands on
a system to provide us with something. We're going to have to
sort through that.
I personally have a
fundamental respect for the right to privacy. I also, as a former
health minister, want to see good management of the system. I
don't think you need identifiable information to do that. I think
you can get that in other ways. But I don't want to see health
professionals hung out. It means a total revamping of what their
liabilities are in the system and how we hold them accountable if
we move in this direction.
1420
Dr
Cavoukian: I actually have a lot of sympathy for your
position. I think health care providers need a lot of
information, and the lockbox from a privacy perspective is very
important, the notion of control. It's not the deal-breaker in
this statute. There are other issues that I think are far more
important, that if we had some significant revision and amendment
on, we would be quite satisfied to proceed with the bill.
Ms Lankin:
May I continue, or do you want to-
The Chair:
There are two other people already in the queue.
Ms Lankin:
I have a number of other questions, so I don't know how you want
to handle this. Do you want to rotate a little bit?
The Chair:
I think, just to be fair, let's rotate. Mr Barrett.
Mr
Barrett: Thank you for the presentation. I just wanted
to get some more information on privacy issues, more of a
provincial-federal relationship. Like many people in Ontario, my
FAC ran out; this is a firearms acquisition certificate. People
across the country are required, as of last December, to fill out
a firearm owner's licence form. This is under the federal
Firearms Act.
There are a number of
questions that farmers and hunters would have to fill out on
those forms with respect to marital status, divorce status,
bankruptcy status and mental health history. It raised the
question in my mind and in the minds of a number of my neighbours
that, once this form is filled out, there would be a situation,
I'm assuming, where a firearms officer would follow up if someone
had outlined a fairly serious mental health situation and they
owned a number of guns and, say, they were a farmer or a hunter.
Do we have the situation in the province of Ontario where
provincial mental health records are transferred to the federal
government, say, with respect to this case, for those people who
perhaps collect antique guns or compete in marksmanship or things
like that?
Dr
Cavoukian: That's a very good question, Mr Barrett.
Those questions with respect to the registry that's required are
very invasive. We certainly object to the specificity and the
details that are required in submitting that form. As you said,
it can ask for mental health information. I believe it asks,
"Have you ever contemplated suicide?" or something of that
nature, and a great deal of very sensitive personal information.
It is a matter under federal jurisdiction, as you know. I believe
the federal privacy commissioner is actually objecting to some of
the questions being asked.
Beyond that, would the
federal government be able to obtain the records from the
province relating to those mental health questions? I honestly
don't know the answer to that. I would think that the only avenue
available would be from law enforcement from the federal register
to the Ontario register. My colleague is pointing something
out.
Mr Brian
Beamish: Just in terms of your question, Mr Barrett, the
act does provide for a health information custodian to disclose
records if they are permitted or required under another act of
the province or of Canada. So, in technical terms, I assume that
would be the authority for collecting the information. Whether
that's proper or not is, I guess, another question.
Dr
Cavoukian: We would fight that. The federal commissioner
is now opposing it, I understand, and we would object to the
exchange of that type of information.
Mr
Barrett: Obviously no one wishes to have someone
controlling a firearm if they have a serious mental health
problem. As you may appreciate, this questionnaire is to be
filled out by millions of people in the province of Ontario and
across Canada. It's a screening process. Right now many farmers,
for example, given the price of corn and what have you, have gone
for counselling for stress. These are not criminals and they
would quite honestly have checked that off.
I am just wondering, what
are they going to see down the road? I have more questions than
answers myself.
Dr
Cavoukian: Potentially they could see all the records,
from what I understand from what my colleague has indicated.
Mr
Barrett: From a provincial agency? Yes? Thank you.
Mrs
McLeod: I am selecting from a whole host of questions. I
am looking forward to reading the written document you've given
us. I recognize there are a lot more very detailed answers in
your written document to some of the questions we may have, so
it's a little hard to know how best to use your time today.
I'm going to try to focus
on three areas of the act for your comment. I think they're
related.
The first is section 6 of the act. It relates to
the concern you expressed that there is a great deal of
government control over directed disclosure at many different
places in the act. One of the areas that we obviously raised as a
concern when the bill was initially presented was the section of
the bill which has now been deleted which would have authorized
direct disclosure to the Attorney General. One of our remaining
concerns has been that the Attorney General could still have
access to personal health information under Bill 155, which is
going through the committee process right now. The response we've
been given by the Attorney General's department is that section 6
means that personal health information is not under the freedom
of information act and the Attorney General therefore wouldn't
have access to it. I guess basically I'm asking you whether or
not you're satisfied that section 6 prohibits any ministries not
identified in this bill from accessing personal health
information.
I've tried to single out
two other parts of this bill: subsection 24(3), which says,
"Unless this act or some other law specifically provides
otherwise," an individual shall not disclose information, and
subsection 30(2): "A health information custodian may disclose
personal health information to a person...."
So it's the number of
places in the bill where there seems to be an openness to define
under what circumstances there can be disclosure-you mentioned
regulations can change the rules, and as we read this, other laws
can change the rules-and whether in any way section 6 prohibits a
fairly easy access to disclosure by other government to other
government ministries.
Dr
Cavoukian: I will ask my colleagues to assist me in
answering that question.
Let me give you a general
comment from a law enforcement perspective on what is permitted
to be obtained by law enforcement officials in terms of access to
medical records. There are two ways in which law enforcement can
access medical records: by a court order, which is
understandable, a warrant, and then the physician or health care
provider is required by law to provide the information, but
there's also a provision that enables, on a discretionary basis,
a health care provider to disclose information to law enforcement
if they feel there is some need to provide that information to
law enforcement. So it's not simply on the basis of a court order
or a warrant.
Mrs
McLeod: That's as it is set out in this bill, which is,
as I understand it, one of the concerns you're raising, that it
is in your view too open?
Dr
Cavoukian: Yes. We would prefer that personal health
information can only be obtained by law enforcement via a court
order. A warrant would have to be produced compelling a physician
or a health care provider to provide the information to law
enforcement.
Mr
Beamish: The only additional comment I might offer is
that section 6 still might not preclude health information
records that are in the custody of a ministry that's not
considered a custodian, so that if those health information
records were with another ministry, I don't think section 6 would
apply. They would still be subject to FIPPA and the disclosure
and access requirements under FIPPA.
Mrs
Pupatello: Can I address the comments you made regarding
your ability to do an investigation with the savings-and-loan
issue this past year? What was interesting is that you said you
couldn't do a proper investigation; you didn't have the powers or
authority to go in and get information on a timely basis and were
stymied, as we remember the information at the time. You say that
now with this bill, as an example, nothing would change. For
example, if there were incidents where inappropriate information
was given to inappropriate people, you can't go in, regardless of
an appeal process they're putting in, ask the questions-
Dr
Cavoukian: We couldn't enter premises, first of all, on
our own. We would have to ask permission. We couldn't compel the
production of records. We couldn't subpoena witnesses, that they
would have to be subject to an interview by us. We do not have
any of those powers.
Mrs
Pupatello: Is there anything under the federal
legislation? I guess there's not.
Mr Tom
Mitchinson: The power to investigate is one of the
principal tenets of the CSA standard and the fair information
practices of the OECD. In any properly scoped privacy oversight
scheme, it's fundamental that you have an ability to conduct
proper investigation. So in this scheme the investigative process
and authority is as is under the current public sector law, which
I think the POSO investigation showed the inadequacies of. It's
fine if there's full co-operation; you can go in and do an
investigation. But if it's necessary to rely on the authority to
do so-
Mrs
Pupatello: It's interesting, because that is actually a
public institution, and you couldn't get anywhere in a public
institution.
1430
Dr
Cavoukian: That's right.
Mrs
Pupatello: Given that the scope of this bill is to
impact the encroaching private sector in the area of health
delivery, how are you going to get in when there are so many more
private companies involved? I guess my question is-
Dr
Cavoukian: That is precisely the point. We have to have
these powers. In the public sector, you get in one way or another
because-
Mrs
Pupatello: You can't get in.
Dr
Cavoukian: Well, you try. You try the best you can.
Usually we get some co-operation, given that they are the
government, but with the private sector we wouldn't have any
power of persuasion or anything if we didn't have the explicit
powers to conduct the investigation. Why would they humour us and
invite us in and say, "Come and look around"? It's highly
unlikely they would do that. All the more reason that these
investigative powers are critical in terms of the private
sector.
Mrs
Pupatello: I don't want to judge the private sector as
having ulterior motives, but if they are not going to be prepared to open
the door to a privacy commission to go in and do an
investigation, with the potential of abuse of information, then
our comments too say, "What are they going to do with this
information if it's other than appropriate planning for
governments of the day to know how to deliver health care in the
future?" Everyone acknowledges there is a great need for those
kinds of data. There's nothing that compels the private sector to
follow the law in terms of what we are going to say they do and
who the custodian is and what the role of the custodian is. Why
would the private sector be interested in going through all of
this gamut of having a formalized plan of protection, a
formalized plan of recovery, retention, maintenance, disposal?
There's no incentive for them to be that concerned with this
issue.
Dr
Cavoukian: You have to have strong oversight. It is
essential in this area because, as you put it so clearly, where's
the carrot? What's going to make them comply, other than their
wish to do so? So I think the need for oversight is even more
necessary in the context of the private sector, and you can't
have oversight without powers. It's just not going to work.
Ms Lankin:
I'll touch on a couple of areas this time around. Let me follow
up on the issue of powers. I think the POSO experience gives us a
very explicit example of what your concerns are and why we need
to address those in this bill.
One of the things I wonder,
though: in the list you went through with us, you talked about
the ability to issue final and binding orders that are not
appealable other than through normal judicial appeal processes
where there has been, I guess, an error in law. That says to me
that we are talking much more than investigation. We are talking,
essentially, the establishment of a quasi-administrative law
tribunal-
Dr
Cavoukian: As we have now.
Ms Lankin:
With respect to FIPPA and MFIPPA, right?
Dr
Cavoukian: Yes.
Ms Lankin:
Can you tell us, would it require anything extraordinary in terms
of the development of the tribunal, of practice laws, of due
process-like, it's all in place; it's simply the powers under
these acts to include these issues before the investigators in
the tribunal process you have now?
Dr
Cavoukian: I'm glad you raise that, because it would not
require any additional infrastructure to what we have now.
Obviously we'd require additional resources. We'd need more
bodies because there is a lot more to cover, but that would
essentially be it. We would do some fine-tuning, of course, but
the infrastructure we need is in place right now. We've been
doing it for 13 years. It works really well. The process is
streamlined. I think the public has a great deal of satisfaction
with it. So it's not the creation of some new function. It's the
maintaining and extending of what we have now that applies to the
public sector to the private sector, to health.
Mr
Mitchinson: I just add one complementary point to that.
Over the course of the last 13 years, we have been before courts
on judicial review applications, and one of the main issues under
consideration in any judicial review is the level of deference
that the court is prepared to give to a body of experts. We have
over the years established a very good track record with the
court in terms of their recognition that we are a tribunal which
does have that expertise. I think that is just another reason why
you should have confidence in not having to worry about, from a
public interest perspective, the right of appeal.
Ms Lankin:
I just wanted an opportunity for that to be discussed on the
record because I think some of the comments I heard after the
POSO report were critical. I think it's a bit of knee-jerk
reaction when a public sector entity talks about expanding powers
of some sort. It's like empire-building. I want it to be clearly
on the record that the administrative tribunal aspect of your
work is already well established. The precedents are there. The
capacity of the infrastructure, as you referred to it, is there.
It's a question with respect to which pieces of legislation.
Currently it's FIPPA and MFIPPA, and here and in some other areas
there are limitations in terms of what you can do. It's not the
full job that you have been entitled to do and empowered to
do.
Dr
Cavoukian: If I can just add one more thing, we do
investigations now; we've done them for 13 years. But we at times
have to go cap in hand and ask, "Could we please come in and
investigate this matter?" It's absurd. But it's not that we would
be doing more than we're doing now. We are doing investigations.
We would prefer to do them properly by having the proper
authority in terms of the proper powers to be able to conduct
them in a very thorough manner in those few cases where we don't
have the co-operation that we normally get. In the public sector
we've generally had a lot of co-operation, and we've always been
doing investigations. In terms of empire-building, it's not
seeking to have additional powers to do additional things we
don't do now.
Ms Lankin:
Quite frankly, when the right to investigate is spelled out in
legislation, there are usually checks and balances, which you
don't have on you at this point in time either. So it's a more
open process.
The second question I
wanted to ask is in the area of your concerns about undue
directed disclosure and perhaps disclosure by exemption, set out
here. Some of the directed disclosures are with respect to issues
that -I'm going to bundle them up-the ministry and government and
policy setters, all of us included, would look at as the balance
with respect to the public good. I think it is important to have
that capacity, to have it as limited as possible in terms of
identifying information and all sorts of things, but the
capacity's got to be there. I'd like to know how we limit it to
what I think is a very necessary public good and not have it
abused in terms of the language that's here.
The second group of
directed disclosures and/or exemptions to disclose are in an area
that I think of as more paternalistic. The Attorney General one
is an example of that. Mr Sampson, as the former minister of
corrections, might
have some comments with respect to the provisions that allow for
information to be shared with penal institutions. They're similar
with respect to psychiatric hospitals under the Mental Health
Act, where it is deemed necessary for the best care and treatment
of the individual. It's a very paternalistic approach there.
Again I reference Brian's Law. We came at it from the other way,
where there was a direction to share that information because
it's deemed to be in the best interests of that person who,
capable or not, is not making the right decisions for
themselves.
So there's two sets of
those things and I'd like you to distinguish between them, for me
at least, if you do distinguish between them, because I want to
see the ability to do one properly, with all the safeguards, and
the other I'm not so sold on yet.
Dr
Cavoukian: Here's something I'll offer you. We will be
happy to work with you, the committee and officials from the
Ministry of Health to sort that out because it's not clear to me.
I hear what you're saying in terms that there are some areas
where the exchange of information is beneficial both to the
health care system and to yourself as a patient. This makes a lot
of sense. It's necessary for planning, I understand that, but
where is it? How do you narrow that in a very narrow, controlled
way and prevent it from accessing it?
1440
What we're not clear on is,
I guess, that first we have to have identified to us what are the
directed disclosures now that must continue and remain, and are
they truly necessary in their current form? In addition to that,
what I understand this bill does is that it extends that. It
could actually direct a disclosure of your medical information in
your patient file from a physician. I don't understand that, I
don't understand the need for it, so I would have to have that
explained in some very convincing manner. We have not been
convinced that that's necessary.
At this point, Ms Lankin,
all I could do is offer to have a subcommittee do something so
that we could work on that area here, because that is a critical
area, and narrow it as much as possible. As a privacy
commissioner I would like it eliminated because it is invasive of
privacy. But privacy is not an absolute right; we recognize that.
There are times when there are competing needs and that has to be
addressed. But if we go that route, then it has to be extremely
narrow and very justifiable and defensible to the public.
Mr
Mitchinson: Could I just add one comment to that? Under
the public sector law, the disclosure provision in the provincial
act, section 42, most of the ones we encounter as disclosures,
not in response to requests for access but proactive disclosures,
are justified on the basis of their being a consistent purpose or
on the basis of being authorized by statute. In those cases I
guess, particularly the authorized-by-statute circumstance, there
has been a public debate, there has been some public
recognition-
Ms Lankin:
Unless it's done in regulation.
Mr
Mitchinson: -that that would happen. So I guess that's a
vehicle for that.
I think the other way the
public interest issues get addressed currently by our commission
is through the appeal process, where we're asked to balance
public interest considerations against other competing demands
and bring what is often a very hard decision to make in that
context. But at least there's a process for dealing with it.
Mr Wood: I
wonder if you could describe for us what you would consider to be
the essential elements that have to be in any act we might pass
in order for it to be considered substantially similar to
C-6?
Dr
Cavoukian: That's a good question, Mr Wood. I would
think it has to have to have the elements of the CSA code, the
Canadian Standards Association model code, for the protection of
privacy that is contained as a schedule at the back of C-6. It
contains 10 principles which relate to rules on the proper
collection, use and disclosure of personal information.
Many aspects of that are
present in this bill but certainly not all of them. It certainly
doesn't look like the CSA code. A number of the requirements of
the CSA code are missing and from the broader C-6 are missing
from this bill.
I'm going to ask my
colleague Brian Beamish to give you some of the greater
details.
Mr
Beamish: I should preface it by saying we haven't done
an extensive analysis of this bill against C-6. I understand the
federal commissioner is speaking tomorrow and that really is his
role.
I think there are some
elements of this bill that might be considered not to be
substantially similar, primarily around the degree of the
collection, use and disclosure of personal information. In this
bill there are a number of exceptions that aren't contained in
C-6. We've talked about the directed disclosure provisions-I
don't think there's anything analogous in C-6-the ability to
collect, use and disclose information for the purposes of system
management, planning etc.
There are a couple of other
areas. The commissioner mentioned the need for audit powers in
her remarks. That's contained in C-6; it's not found in this
bill. But I think primarily it's the degree to which personal
information can be collected, used and disclosed and the degree
of exemptions that allow for the use of that information without
consent.
Mr Wood:
Who makes the determination as to whether or not it's
substantially similar?
Dr
Cavoukian: I understand that it will be the federal
government, with the recommendation of the federal privacy
commissioner.
Mr Wood:
When you say the government, do you mean the cabinet?
Dr
Cavoukian: Is it cabinet?
Mr
Beamish: Yes.
Dr
Cavoukian: I understand cabinet, again with the
recommendation of the federal privacy commissioner.
Mr Wood:
You proposed to us a regime where your office would be both an
investigator and an adjudicator.
Dr
Cavoukian: How did that begin, or-
Mr Wood: That's the regime that
I understood you proposed to us, that you thought should be in
this bill.
Dr
Cavoukian: That's the regime we have in effect now, that
we've been following since day one of the operation of our
office, where we investigate complaints and we mediate. We have
appeals that come to us in terms of appealing requests for access
around information. If the government denied access, for example,
you could appeal that to our office. We attempt to mediate a
solution, and if that doesn't work, we adjudicate. It goes into
the adjudication stream, and a binding order is issued by the
adjudicator.
Mr Wood:
Do you see any conflict of interest in having both roles in your
office?
Dr
Cavoukian: That's a good question. Objectively, that
might appear to be the case. Having worked in the area, I don't
believe that to be the case. What we generally do is, for
example, when a case goes into mediation we have a mediator
assigned to the file who attempts to do everything he or she can
to effect a resolution, a mediated solution to the file. If he or
she is unsuccessful, it goes to another individual, who is the
adjudicator. There is a brick wall, sort of a Chinese wall
between them. The adjudicator gets the file with the information.
It is not effected by the investigator. The two parts are quite
separate.
Tom, you can speak to that
better. Tom heads the department of adjudication.
Mr
Mitchinson: The concern that you raise is a very
important concern. You can't have a model, which is a statutory
model under the provincial act, which includes both mediation and
adjudication under the same umbrella of the same commission
unless you're very careful about honouring well-established
concepts such as mediation privilege and allow for the two
systems to work effectively together. It's a question of design
and a question of procedural requirements, but it is no longer
uncommon. Our statute, the provincial statute, was one of the
first laws that actually introduced a statutory mediation scheme
within an administrative tribunal. The idea of including a
mediation function within an adjudicative body is, if anything,
growing. It's becoming more the norm, I would say.
Mr Wood:
My problem relates more to the investigation and the adjudication
being in the same place. I understand why mediation and
adjudication are linked. The short answer to that is what? Do you
see a problem or don't you?
Dr
Cavoukian: I don't. We have been doing that for 14
years. I think it's been effective. We have not had any
complaints that I'm aware of with the system that we designed,
which has incorporated both.
Mr
Mitchinson: I think maybe what Mr Wood is getting at is
more the statutory authority of investigating under the privacy
complaint side and then being part of the inquiry for an appeal,
not the request for your own personal information. Is that what
you mean?
Mr Wood:
What you're doing, in effect, is proposing a model where you have
a role in the investigation and the adjudication.
Dr
Cavoukian: Correct.
Mr
Mitchinson: Yes.
Mr Wood:
I'm inviting you to comment on whether or not you think that
creates a conflict of interest.
Mr
Mitchinson: I don't think it creates a conflict of
interest, no. But at the same time, I think it's very important
that you have properly designed procedures in order to protect
the integrity of both of those complementary processes.
Dr
Cavoukian: You have to be mindful of the issues you've
raised for the reasons you've raised them, and cognizant of the
need to create systems that manage those concerns. But having
said that, it's doable, and I think our system does in fact
manage it well. We invite you to take a closer look at it at your
pleasure.
Mr Wood:
Maybe I can come to another issue, which is a hypothetical one.
The basic scheme of this act is to control both collection and
disclosure. Presumably we could have gone to a model that
controlled disclosure only, because that's the real concern. The
concern is that people's information is disclosed, information
that's theirs, without their consent. That's the fundamental
concern we're addressing, I think, in this bill.
Dr
Cavoukian: It's a huge concern for privacy. Certainly
disclosure is a large concern. But fair information practices,
which, as I mentioned earlier, form the basis of privacy
protection worldwide-any statutes that reflect these things
called fair information practices always start with the principle
that limits the collection of information to only that which is
needed to achieve the purpose of the collection. So I would argue
that only limiting disclosure would not be sufficient, because in
order to properly, in this day and age, limit disclosure you
should start with limiting collection. Because the more you might
collect that's not directly related to the purpose that you're
trying to achieve, the greater the amount of information you have
to manage in terms of the potential for its disclosure and abuse.
The more you collect, the more information is at risk, so one of
the basic principles of privacy is that you only collect the
information that you need. I think you have to start there.
1450
Mr
Beamish: I think there are many members of the public
who are concerned about the collection issue. It's not uncommon
for our office to get calls from people saying, "I went to fill
out a particular application and I was asked for this set of
information which appears to me to be totally unrelated to the
purpose of the application. Do I have to provide it?" I don't
think it's uncommon for people to be concerned about the extent
of the collection of their information.
Mr Wood:
I'm not taking away from the legitimacy of the concern. What I am
trying to get a fix on is, is there any reason that we have to
control collection in order to control disclosure?
Dr
Cavoukian: The shortest answer would be that in order to
be substantially similar to C-6 you would absolutely have to have
limits on collection. It's one of the first principles in the CSA
code.
The broader answer would be that I couldn't
imagine any kind of privacy legislation that would not include a
clause that would place restrictions on the information
collected.
Mr Wood:
That's not answering my question. Why do you have to do that in
order to regulate disclosure? The law society, for example, tells
me what I can disclose; they don't tell me what I can
collect.
Dr
Cavoukian: But the purpose of the bill is not only to
regulate disclosure. One would argue that in this day and age
where there's so much information about you collected routinely,
disclosure is the worse-case scenario, that your information may
be disclosed contrary to the proper uses, that collection is a
huge issue and the goal should be data minimization. The goal is
that you restrict and minimize the amount of personally
identifiable information because by virtue of collecting it in
that form you are subjecting it to the potential risk of
unauthorized disclosure. So the rationale would be, restrict what
you collect to only what you need and place restrictions on
collection so that you minimize the potential problems of
disclosure. Disclosure's a huge problem but the only intent of
the bill is not to regulate disclosure.
Mrs
McLeod: I wanted to ask you to address this whole issue
of what I think you referred to as "anonymized" information,
which to a layperson means non-personally identifiable
information? Is that a fair translation?
Dr
Cavoukian: Yes, absolutely.
Mrs
McLeod: What I want to get at is, when is it really
necessary to use personally identifiable health information,
whether it's collection, use or disclosure? So my first question
would be, is registration information considered to be
non-personally identifiable information and under this bill, if
it's just registration information, would be freer to be
collected, used and disclosed than what might be considered
personal health information?
Dr
Cavoukian: If you think of it as a continuum, personally
identifiable information would be all of your medical records and
all of the content. Registration information is also personal
information-personally identifiable information that identifies
your name, your address, your OHIP number-but it is restricted to
those qualifiers as opposed to having all your patient records
associated with it. So registration information to me is personal
information but it is a restricted subset of personal information
that contains identifiers that identify you.
Mrs
McLeod: One of the reasons it seems necessary to sort
this out is to do what you've just talked about in terms of
narrowly defining what needs to be collected, used and disclosed
for public interest purposes-any number of them have already been
talked about around the table-and the sense you've already
conveyed that this bill goes too far in having too many uses of
too broad a scope of information.
The are two specific areas
I'd like you to address. One is the collection of information,
and this would be under subsection 30(2), which I mentioned
before, about the health information custodian disclosing
personal health information to a person for management of
programs and services, which includes detection and monitoring of
fraud. My question on that is, do you need the personal health
records to deal with fraud if in fact-I'm assuming that the
detection of fraud deals with the provision of services by the
health care provider, not fraud on the part of the person
receiving the services and holding the record.
The second major area-and I
know it's a totally different area but it still, in my mind,
comes back to this question of identifiable and non-identifiable
information-is research. You spent a lot of time in your response
to the consultation document on how careful you have to be about
personally identifiable information used for the purposes of
research. I understand there are some areas of research where you
can transfer personally identifiable information now. I guess I'm
questioning in how many cases of research you need fully
personalized information when you need registration information.
Are there ways of defining much more narrowly what each purpose
requires and keeping as much anonymity as possible, and does this
bill go nearly far enough in those areas?
Dr
Cavoukian: I think there are indeed ways of doing that,
but it requires a great deal of attention and focused work. Let
me give you our take on it. I think you always start with the
premise that you need consent. For research, ideally, you should
always start with the consent of the individual. You always start
there. Then you work down a continuum. The other side is
aggregated data, with no personal identifiers at all. Do with it
as you wish, because there are no personal identifiers. Between
those two there's a continuum of how much identifiable
information you need. We always say to get consent if at all
possible. If you can't get consent, can you use anonymized data,
can you use aggregate data, can you use coded data where you
substitute a code? That can be done through an encryption scheme
where the identifier doesn't link back to the identity. It can
eventually, but you have to take many steps to get there.
In my view, there is only
one subset of research that truly does require personal
identifiers, and that's the narrow class of epidemiological
research. It's population-based research and it requires access
to all the population, therefore excluding the ability to obtain
consent. There have been a number of studies that have
demonstrated that in jurisdictions where consent is required
before epidemiological research can be done, meaning that some
small proportion of the population excludes themselves, it has
swayed the results of the research, because even small
percentages of individuals withdrawing affect population-based
research. So in that very small subset of research I would accept
non-consensual research, but it's a very small subset.
With the exception of that,
I would always explore either obtaining consent or using the data
in some way where clearly, if you must have a personal
identifier, it is not the personal identifier itself that is
linked to the record,
but some coded information that is several steps removed from the
identifier and a great number of controls, both procedural and
technical, put in place. There are ways to do this and there are
a number of organizations that do it well now that we could point
you to.
Mrs
McLeod: In the case of epidemiological research, that
would require identification by name as opposed to by anonymous
record?
Dr
Cavoukian: It never requires identification by name when
you're working on the file. The reason at some point you would
need to work back to a name is because 20 years down the road you
need to find out, "This person has been smoking all their life.
What is the effect?" You need to link it with results afterwards,
and in order to do that you need the identifier to be able to
connect back to this individual.
Mrs
McLeod: Could you comment too on the identifiable versus
non-identifiable information when it comes to detection of
fraud?
Dr
Cavoukian: That's a really tough one. I'm not an expert
in this area; I only know about the privacy issues. Obviously, we
are all opposed to fraud and we would seek to have it eliminated,
and there have to be ways and places to address that issue. But I
don't know why the individual, who is the innocent bystander
usually in these cases, has to have their entire record subjected
potentially to open records in court when the fraud charges, for
example, against a health care provider work their way up and go
before the courts. All of those patient records involved are then
open. Why would that be the outcome? It's like you're penalizing
the patients, who have had nothing to do with this, because
you're pursuing fraud charges against a health care provider.
There has to be some means
of working back, but I'm not convinced that the information has
to be identifiable in terms of the patients of the individuals
leading to the charge, that there has to be a way you can work
back to that and access the data if necessary but that it
shouldn't be readily available in identifiable form.
1500
Mrs
McLeod: Have you seen that dealt with in legislation in
other jurisdictions then?
Dr
Cavoukian: It's so new. Do we know if they do in other
statutes? We can get back to you on that, Ms McLeod. I really
don't know how they handle that in other statutes.
Did you want to say
something, Tom?
Mr
Beamish: I just have one comment and I meant to make it
when Ms Lankin asked her question about how you limit the type of
information that's disclosed for the purposes of management of
the system, going back to the directed disclosure.
Section 12 of this bill
provides what I think are some fairly solid limitation principles
and in effect it says, "Don't collect or use registration
information if anonymous information will do. Don't collect and
use identifiable health information if registration information
will do, and if you really need to have people's personal
information, only collect what you have to collect." However,
there is an exception, 12(8), which says these don't apply if the
disclosure or use is required by the act. I would interpret that
to say that those very good limitation principles don't apply to
the directed disclosures under section 31, and we think they
should.
Dr
Cavoukian: One other positive element, Ms McLeod, of the
bill is that it requires for research purposes that the research
projects go through an ethics review board, which I think is a
very positive development, that there are requirements before
personally identifiable data can be accessed.
Mrs
McLeod: I think it leaves out some of the areas that you
had addressed in terms of demonstrating that it's necessary to
collect this information for the public good etc. I'm content to
waive and take a turn around again next time.
Ms Lankin:
Working backwards on a number of those issues, on the fraud issue
there are elements of this bill that deal with access to personal
records and correction of records. I want to talk about the issue
of amendment of records for a moment because OHIP is a very good
example. Currently, as you know, if there have been incorrect
billings for a doctor, whether they're purposely fraudulent or
not, which are recorded against someone's OHIP number and that's
discovered, it's impossible, it seems, for the individual to get
that information removed from the OHIP file. So if it indicates
incorrectly that you have been seen and been treated for some
disease or some disorder, some of which unfortunately in our
society are more stigmatized than others and so people have
concern, but it's incorrect, the ability of the person to get
that off the OHIP file is very problematic. It gets red-flagged
and there are all sorts of notes, like this wasn't real, but it
follows that person.
Does the bill, in
correction of records, fix that? I can't see that it does. Are
you concerned about that at all?
Dr
Cavoukian: I can't speak to this issue because the order
I was mentioning to you earlier that I will be adjudicating
speaks to it, but Tom can speak to this generally.
Mr
Mitchinson: I can speak to it in a general sense. I
think that right now the correction appeal that Ann is involved
with provides the oversight to determine whether that type of
correction in fact can be made. I think that under the current
drafting of this bill that is not an appealable decision. So
that's a problem for us, that the dispute resolution in those
correction request situations must, we think, be present in order
to have an effective oversight scheme. The right of correction is
in some ways as fundamental as your right of access.
Ms Lankin:
Absolutely. This question was asked of the ministry earlier and
they are going to get back to us with a response. I wonder if you
have any comment. The registration information is defined within
this act. One, we were interested in how standardized the
definition of registration information is across existing Ontario
statutes and other jurisdictions. Secondly, we wanted to know
specifically why information about employment status was included in
registration information under our health act. Is this an area
you can answer in terms of the standardization of the definition
and, secondly, do you have any concern about status-of-employment
information being part of the definition of registration
information under our health information and privacy
legislation?
Dr
Cavoukian: It doesn't leap to mind. One of our lawyers
has said that employment information sometimes is needed to
determine eligibility for certain services.
Interjections.
Ms Lankin:
Well, they'll get back to us on that. I'd ask you to take a look
at the answer and see if you have any concerns. It jumps out at
me as inappropriate in this piece of legislation in terms of what
registration information would be collected and/or protected
and/or directed to be disclosed. Employment status-somehow, I
don't get it. It's not EI, it's not an Ontario Works program;
it's health care.
Dr
Cavoukian: We'll look at the other statutes and see what
there is. I'm interested in that as well.
Ms Lankin:
On the issue of collection of data versus disclosure of data, you
were very specific in the breadth of your concerns about the
number of directed disclosures and/or exemptions for ability to
disclose. You didn't comment specifically if you had any concerns
about the restrictions on collection of data. I think your
associate did indicate that there were some good principles
there, yet there was one override section which you wondered if
that threw it out. Could you give us your comment on the bill in
terms of how good a job it does on restricting unnecessary
collection of data?
Dr
Cavoukian: It's not too bad but we would add one
requirement: that the collection of personal health information
should be allowed only where it is required by law or necessary
for a lawful purpose. As it reads now, subsection 22(1) states
that a "custodian shall not collect personal health information
unless ... authorized by or under an act or necessary for a
lawful purpose related to a function or activity." We would just
strengthen it a little by adding the word "required" by law, not
that it's just simply authorized by law. That was the distinction
we were making.
Generally speaking, we
thought it was not bad. The only thing we would add is the word
"required," and that's in our submission, which you will see.
Ms Lankin:
A further note on the issue of collection, and I guess this goes
to the question of substantial similarity to C-6: you indicated
that in C-6, one of the principles is that bills must restrict
collection for the purpose of systems management in particular,
which is the issue I was getting at earlier around disclosure, so
collection and disclosure.
I'm interested if you could
tell me-and perhaps I should hold this question until
tomorrow-how you see the impact it's going to have on the private
sector. I'm thinking now in terms of health information collected
by insurance companies. People have a huge concern there.
Certainly there are a lot of reasons they do it, but systems
management and claims management, where to put resources, where
to crack down, where to bring in experts or whatever they do, a
lot of the collections and a lot of the information goes to that.
Will the new system affecting the private sector, until Ontario
brings in its own law, let's say-will C-6 have any kind of impact
there on what they're doing?
Dr
Cavoukian: I think it will have a huge impact. I don't
know if you want to speak to it specifically. It will impact,
there's no question. At the time you are applying for the
insurance or are eligible for the services, you consent to it. So
at the beginning, there is presumably something that would obtain
your consent for a lot of those activities, and presumably you
would provide your consent. But unless it's consent-based like
that, there is no consistent purpose, there are no other clauses
under C-6 that I'm aware of that would permit that type of use of
information.
1510
Ms Lankin:
Is there a common law principle, when you talk about these
consents, where you provide consent, that it has to be informed
consent? Is that built into this legislation that they have to be
informed?
Mr
Beamish: One area that I think is good about this
legislation is that it does provide greater guidance around what
is consent. We've made some recommendations in our submission on
how to strengthen that to ensure that it is informed consent and
set out what the elements are, but I think the bill is a good
attempt at setting out what a consent would look like.
Mr
Mitchinson: And there is common law direction.
Ms Lankin:
I would have assumed that.
I have one other comment to
make on a different issue, but just on this, Mr Wood: when you
were raising some of these issues around do we need to do both of
these things, I think the simple answer is that in order to have
a bill that is substantially similar, we do.
I was also reminded,
though, of the federal government recently, the revelation we all
came to that there was this information being collected in HR.
There was huge public concern about that, and it wasn't an issue
of where it was being disclosed or how it was being disclosed. I
think the balance that this legislation strikes around those two
things is an important one for us to keep in mind in terms of
public expectations.
When Mr Wood was asking you
about your role of investigation versus adjudication and the
possible conflict inherent in that, you answered this several
times, but Mr Wood did continue to use the words, "You are
proposing to have this dual role." I just wanted to get it clear
again that it exists.
Dr
Cavoukian: We do it now.
Ms Lankin:
That's not to say that down the road people may not want to see a
separation of these roles, but your proposal in terms of the
powers under this act is to mirror the powers of final and
binding orders under FIPPA and MFIPPA and to strengthen your
powers in general with respect to the investigation in obtaining
documents or obtaining entry, right?
Dr Cavoukian: That's right. It
will create a parallel system, if you will. There would be no
additional powers. The activities we're engaged in now would
continue and extend to this area.
Ms Lankin:
Right.
Mr
Mitchinson: I was just going to say under the same
scheme.
Mr
Sampson: Along that theme of questioning, the exception
you're proposing is that there be no appeal to another body. So
I'm not terribly troubled by the investigation and adjudication
roles that you currently have and that other independent
commissions have. What would trouble me, though, is if there were
a loss of appeal to what is generally the courts of this land as
the final jurisdiction of appeal for these decisions. I'm a bit
troubled by your suggestion that we really don't need that
because we haven't made any mistakes so far.
Dr
Cavoukian: I'll respond to that briefly and ask my
assistant commissioner to respond in greater detail.
I could see how the optics
of it might look self-serving, that we don't want another appeal
body to review our decision and that it's not necessary. There is
the ability now to seek a judicial review of our orders if there
is a procedural error in law, so there is an ability to have some
decisions reviewed. But if you look at the appeals to the appeal
courts, it would add, in our view, an unnecessary additional
layer that doesn't exist now, and it is a costly layer and it's a
lengthy layer. We think it would impact the public poorly. It
wouldn't impact us dramatically. We're very confident in the
decisions we've made. We've had deference from the courts in
terms of the expertise of our office. In terms of how it would
impact us in fact would be minimal, but I think to the public, to
complainants, to appellants, it would have a serious impact. I'll
let Tom speak to that.
Mr
Mitchinson: I just wanted to make sure you were clear
that under the current scheme there is no appeal to a court. So
it's not like we're suggesting-
Mr
Sampson: There's a judicial appeal here.
Mr
Mitchinson: No, a judicial review. Any decision of an
adjudicative body would be subject to judicial review, but that's
very different than an appeal. We're not suggesting that under
this model there not be a right to apply for judicial review.
Clearly there would be.
Mr
Sampson: See-
Mr
Mitchinson: If I could just complete my thought there, I
guess the best parallel you could look to for the design of a
system which would be like this is the Alberta model, which also
has a commissioner with order-making powers that are not subject
to appeal but nonetheless are subject to judicial review.
Mr
Sampson: I heard your comments-and I'll read your
submission in more detail later-that you wanted further powers to
subpoena documents, subpoena individuals. Mind you, it only
relates to section 45, appeals, but under section 69 there are
some fairly substantial investigative tools that you have that
even courts don't have, like the right to subpoena documents, the
right to inquire and interview in the absence of the other party.
These are substantial. It only relates to section 5, inquiries,
which I think has to do with having the record removed, altered
or amended, but those are pretty substantial judicial rights that
aren't even available in a general court of law to appellants and
likewise. So I don't have problems with the proposal, with the
exception that some sort of a final appeal, if it's not there,
would lie there, and I just want to leave that.
Mr
Mitchinson: The inquiry model that is proposed in the
section of the bill that you're referring to is mirrored very
much on the inquiry model under the public sector law for access
and privacy right now.
The ability to hear
evidence in the absence of other parties and that sort of thing
is very much designed to protect the type of adjudication that is
taking place within an access situation, where often you have
other people's personal information which is at issue-
Mr
Sampson: Yes. And there are reasons why-some of which we
touched on in some questioning over there as it relates to the
fraud case. I think it was a question of, why does a person's
personal record have to be attached and their name attached, if
you will? I understand that. When I saw that comment, it worried
me a bit, and I'll think about it some more.
Mr
Mitchinson: Just reflect on it, because it's not new.
It's not suggesting something new. It's suggesting a model that
would apply, an existing working model.
Mr
Sampson: Yes. Maybe the existing model is problematic to
begin with. I don't know. Just because we've done it before
doesn't mean we do it again.
Ms Lankin:
Mr Chair, could I just ask a question that follows up on the
point? It might be that it is a research officer who would
provide it, or the commission.
There are a whole lot of
administrative law tribunals that are operating now with the
right of final and binding orders that are not open to appeal,
only open to judicial review, whether it be the labour board or
the Workers' Compensation Appeals Tribunal or the municipal board
or whatever.
Interjection.
Ms Lankin:
There's a whole bunch. I just wondered if we could get an example
so that we know, because some of them actually have appeals to
cabinet. Not that cabinet would want this stuff being appealed to
them, but if we know what the comparisons are, I would find that
helpful.
Mr
Sampson: Right now you can appeal it to cabinet, so-
The Chair:
We'll get research to get a copy of that. Mr Sampson, are you
just finishing up?
Mr
Sampson: I have one more. Now I have to remember what it
was. Oh, yes. It was very helpful to have Ms Lankin raise the
issue of some disclosure requirements that might be important in
a certain ministry I once had some control over.
Ms Lankin:
Well, that's debatable.
Mr
Sampson: It's 3:20, so I probably still have no control
over it. At least that's where I am now.
It's very crucial for the safety and security of
institutions to know the medical records of those who are being
admitted, to maintain the safety and security of those who are
housed in the institution, let alone those who work there. I'm
quite encouraged to hear that you are prepared to work with us to
try to find out where those exceptions are and deal with them. It
would be a real challenge if somebody were able to say, "No, you
can't have access to my records," and yet they were walking in
the door of a correctional facility in this province with a
disease that could be transmitted to the rest of the population
and the workers. I would find that to be totally unacceptable and
way past the bounds of what's acceptable to protect personal
health information. In some cases it would be problematic if
individuals could actually frustrate what goes on in the
institution if they refused to disclose certain types of
information, like their drug addiction history etc, which is very
important to know the details of in corrections in order to deal
with the ailment. I'm encouraged by your suggestion that you want
to work with those solutions.
I don't know that you can
actually buttonhole all those exceptions upfront. I don't think
we're smart enough to do that collectively. I don't mean to imply
upon you, Commissioner, but I don't think the legislators are
smart enough to figure out all the exceptions here. So there's
going to have to be some empowering legislation or regulation
that helps us deal with these exceptions as they pop up from time
to time.
1520
Dr
Cavoukian: I recognize the concern you identify. I think
that's a legitimate one. I believe the act provides that
disclosures related to the individual-that a health information
custodian could disclose, may disclose personal health
information relating to an individual to a facility that provides
health care. Is that correct?
Mr
Sampson: Yes. But I thought you were somewhat frustrated
with that general definition.
Dr
Cavoukian: Not that one.
Mr
Sampson: It's another one, then. OK.
Mr
Beamish: The act will provide specific authority to
disclose information to a correctional facility for the purpose
of providing health care or managing an inmate in the facility.
We didn't raise any difficulties with that in our submissions. We
were fine with it.
Dr
Cavoukian: Because we recognize there are times where
there are legitimate disclosures that have to be made.
Mr
Sampson: I'm sorry; I just picked up on the general
comment, as I thought Frances did, that you were somewhat
concerned about the general exceptions. I guess my point is,
sometimes you've got to have the general exceptions, because I
don't think we can collectively write down on a piece of paper
all the exact exceptions.
Dr
Cavoukian: I agree, and if you look at our submission,
we given them in the same order that they appear in the act, and
you'll see that we made no com-ment on that section because we
believe it is a legitimate disclosure.
Mrs
Pupatello: As an example of something that is currently
happening in Ontario that many in the medical community have
problems with, under the new Ontario Works Act and the ODSP, the
disabilities plan, the physician has to sign the chit that
authorizes the transportation costs, with a receipt, of the
individual going to the psychiatrist on a weekly basis by bus.
They can only get that receipt when the physician signs it, and
the doctor has said, "I am not signing that because it's an
identifier that this individual is a psychiatric patient," so
that's a problem currently in Ontario.
Under the current law, what
powers do you have to change the system under Ontario Works
and/or ODSP so that that identifier doesn't exist and how will
this bill improve that current situation?
Dr
Cavoukian: I'm going to ask Tom to answer that.
Mr
Mitchinson: If it's the same situation that you're
describing, I believe we did have a complaint which was
associated with that practice. Under the current system we would
try to work co-operatively with the body that created the form
and the expectation, ask them whether or not it was an allowable
collection of personal information under the act or whether it
was really necessary to do it. Speaking off the top of my head
here, I believe that in the particular institution we were
dealing with in that case, they agreed that it was not necessary
and they agreed to amend their form to stop identifying that kind
of information for the purpose of collecting the benefit.
Mrs
Pupatello: So were you at their whim, that they felt
like agreeing with you?
Mr
Mitchinson: I think that's the case in all of our
investigations currently.
Mrs
Pupatello: Specifically, page 18 itemizes which acts
supersede this privacy act. The Ontario Disability Support
Program Act and the Ontario Works Act supersede this bill. So if
they feel like it, that's great.
Dr
Cavoukian: We would be forced to co-operate, to seek
their co-operation and negotiate.
Mrs
Pupatello: The question around that, just in the area of
what I guess many in the public would worry with the encroachment
of more and more private companies in the area of the delivery of
health: for example, in long-term care, every future provider or
builder is likely going to be the private sector. The system, in
my view, is set up so that they're the only ones that can finance
these homes. It's in the best interests of a long-term-care
facility to have the healthiest individuals in their beds. Under
the current law, then, they can access all the information
required to ensure they are getting the healthiest 100 people in
the 100-bed facility that they are building. Can that happen
today? If not, because this is what's happening currently and
this bill is being touted as greater protection, then I have to
assume that after this bill is passed, these people have better
protection in that instance. There's an up-to-20,000 waiting list
in Ontario for a long-term-care bed. It's in that private
facility's best interests to have the healthiest patients. They
are not going to want to find the ones who have a long health
history of certain types of illnesses and diseases. I wonder, in
the current law, what protection there is, and what better
protection there is after this bill, because this bill is for
better protection.
Dr
Cavoukian: Ms Pupatello, we would have to review the
legislation that governs that because I'm not intimately familiar
with it, how it would interact with this bill. Any ideas?
Mr
Beamish: No. I'd have to go back to the legislation for
long-term care and see what authority they would have under that
bill to collect that information to start with.
Ms Lankin:
It's not just the long-term care. Municipal homes for the aged
come under MFIPPA. There are some minor provisions in the Public
Hospitals Act. There are health care provider professional
regulations.
Mrs
Pupatello: But just as an example.
Dr
Cavoukian: We'll get back to you on that.
Ms Lankin:
I'm saying you can't look just to the one act to answer your
questions, Sandra.
Mrs
McLeod: The information is provided with CCACs that
aren't governed by-
Mr
Mitchinson: If we can get a handle on the current
situation, really, and whether or not the law is adequate in
correcting what you would perceive to be an inadequacy in the
current regime, which is I think Ann's main point at the
beginning. You know, people think, incorrectly, that there's a
current level of protection that in fact doesn't exist.
Mrs
Pupatello: So if you're going to go to all of the
trouble after 20 years, as we have individuals who have been on
this project for 20 years, surely we're finally going forward
with an act that is going to cover at minimum-half of the
spending in the health ministry is other than the hospital act,
say, that already has some protection. So of all the work that
we've done, surely where we're spending the lion's share of
health dollars we are going to now have greater protection. But
in fact this bill does not cover what the CCACs do in their
placements into a long-term-care facility. I mean, we have missed
a huge sector. So then this is-I don't want to say, "This is the
best we could do here after 20 years," and we've missed it.
Interjection.
Mrs
Pupatello: Depending on what it is, it clearly doesn't,
and when I say the examples of what-
Dr
Cavoukian: We'd have to look to see if that will be
caught.
Mr
Mitchinson: But it's arguably not a flaw with the
design; it's a flaw with the application of the design. So if
you're trying to control disclosure to only those circumstances
where it's justifiable by law or by program or whatever, the
framework of the law allows you to move back from the existing
design and to identify those and to turn your mind to whether
they are justifiable. So it's more of an application, I
think.
Mrs
Pupatello: I guess a general question is, what will we
not be able to do if there's a lockbox in this bill? What can't
we do that is absolutely critical enough that it is removed from
the draft?
Dr
Cavoukian: If there was a lockbox in the bill, what
could you not do, the individual, or-
Mrs
Pupatello: All of the intent of the government-I mean, I
haven't understood clearly from the ministry earlier this morning
why the lockbox was taken out. I didn't understand the concept,
what drove that. It's because we needed to-the research element
wasn't there. Apparently, that's not the case. I couldn't find
the rationale for taking it out, so clearly there's one. What
can't we do as government in terms of protection if the lockbox
is there?
Dr
Cavoukian: I don't think it impacts on government, but
quite frankly you would have to ask the government that. I don't
know the reason it was taken out. I don't think it would impact
government at all in terms of government decision-making, but you
would have to ask the government. I'm sorry.
Mrs
Pupatello: So you can't predict what the government or
anyone-what do we lose, what does society lose-
Dr
Cavoukian: I don't think you as a society would lose
anything. I really don't. I think the only impact would be, and
this is an adverse impact for the individual patient, that
perhaps in the future some treatment which they're getting might
require knowledge of what they have locked up and that physician
would be precluded from providing full and proper treatment
because they didn't have knowledge of it. That's the only thing I
can think of.
Mr
Sampson: Mr Chair, maybe it would be appropriate to have
Gilbert come up. I'm volunteering you, Gilbert, to sit at the
table to maybe address this question. It's a legitimate question.
We would like to hear kind of the other side of that-I don't mean
there is another side-and then make joint questions if we can.
Would that-
Dr
Cavoukian: That's fair, and he would have the
answers.
Mrs
Pupatello: We asked earlier about certain conditions: a
patient who has AIDS, hep C. Health providers need to know about
certain illnesses for their own protection to give the best
medical advice, for the safety of themselves as providers in some
cases. You can see why information is critical, but you're always
motivated to give consent when you're asked, and that's the way
it is today. When I'm in front of a doctor or I'm about to
receive care, when I am going through an insurance process for a
new job, if I don't sign on the line to give information, I
likely am not getting the job, and there's nothing the privacy
commissioner is going to do about that.
1530
Dr
Cavoukian: No, that's right, and let me give you an
example of that.
Mrs
Pupatello: It is implied, "You must consent."
Dr
Cavoukian: That's right, but that's why in certain
cases-if you look at genetic information, a number of the
statutes coming out in the United States, where they're way ahead of us,
prohibit the employer from even asking the question, "Have you
had any genetic testing done?" because as you're saying, just by
virtue of asking the question, if you're applying for a job,
there's pressure on you to answer. The question should not be
asked.
Mrs
Pupatello: But in the health system today, that happens.
I am not going to arrive at the emergency-when I can find an
emergency room in Ontario-and say, "Here's my medical
information, but I don't want to give it all to them." Just by
virtue of shortage of service to provide, I will not get the
service. So I am forced, as a member of the public, to provide
information. Even if I don't want to, I will have to give
consent. That's one side of it.
When I ask you about this
toolbox, with all respect, it's been paper only-
Interjections: The lockbox.
Mr
Sampson: You just gave us a heart attack over here.
Interjections.
The Chair:
That's our last question, and we had agreed we would go back to
clause-by-clause. Perhaps I might suggest that-
Mrs
Pupatello: Can you finish that question then, if you
could?
The Chair:
My only response to that, Ms Pupatello, is we've already had the
response from Ms Cavoukian and her staff. I would think it might
make more sense to have the transition and have all of the
ministry people there to give their perspective, recognizing
we're almost out of the time we had committed anyway.
Mrs
McLeod: Can I ask that one final question?
The Chair:
Sure.
Mrs
McLeod: Subsection 11(1): "In the event of a conflict
between a provision in this act respecting confidentiality and
one in any other act, this act prevails unless this act or the
other act specifically provides otherwise."
In your view, does that
really make all of this an exercise in futility?
Dr
Cavoukian: The answer I will provide is, if you look at
our submission, you'll see the areas we thought were problematic.
We didn't have a problem with that.
Mrs
McLeod: You don't have a problem with that?
Dr
Cavoukian: We did not. If the other act specifically
provides otherwise, you go to the other act and see what
provisions are there in terms of confidentiality and protection.
Usually there are some provisions that address the issue. For
example, there's our act or some other act. There are many types
of confidentiality requirements in various statutes.
Mr
Mitchinson: I think the intent of that section is to say
that the confidentiality expectations of this act will prevail
over confidentiality provisions of another act, with the
exception of those four circumstances identified in subsection
(2). So it's a similar situation and confidentiality provision
under the public sector act as well. There are a few limited
circumstances where it says, "The other provisions, even if
they're not as strong as the ones that are in this law,
nevertheless shall prevail." I think that's the same intent in
this law.
Dr
Cavoukian: We have that-
Mrs
McLeod: Could you tell me why the other side of that
coin is not equally at least possible under this bill, which is,
if that clause that was removed from the bill that allows the
Attorney General to access information in order to determine
whether proceedings should be undertaken, the clause that was
deleted-if the Attorney General decided to add that to Bill 155,
why would that not take precedence over any confidentiality
provisions in this bill under that clause?
Mr
Mitchinson: I believe it would have to be listed in sub
11(2) as an exception.
Mrs
McLeod: It would have to be specifically listed? OK.
Mr
Mitchinson: There are a couple of ways in which you can
override-
Mrs
McLeod: So you don't see that as meaning that any future
act can prevail?
Mr
Mitchinson: Yes, you can have a provision-and
unfortunately, from our perspective, it happens more often than
we'd like-where a statute goes through and says "notwithstanding
the Freedom of Information and Protection of Privacy Act." That
is a problem, yes. But the structure of the design of section 11
here is not negative in that sense. It's saying that the default
position is that the confidentiality provisions of this act
prevail. So at least there is a requirement for an act to include
an override, and for the Legislature to consider whether it's
appropriate in the circumstances.
Ms Lankin:
Unless such act sets out the power for cabinet to do that by
regulation, which is the problem that we have over and over
again.
Mr
Mitchinson: It's the same issue. We've come up against
that frequently as well.
Mrs
McLeod: Can we express our appreciation for the
presentation?
The Chair:
Absolutely. We thank Ms Cavoukian and her colleagues very much
for coming before us here today. It's been of great assistance,
I'm sure, to the members as we digest this important bill. I
appreciate both your opening comments and the critiques that you
provided. In the ensuing weeks, should the committee members have
any questions, I hope you would be in a position to deal with
them. Also, should you have any further reflections, as you see
the various deputations made before us, and you wish to comment,
we would look forward to receiving those submissions at any
time.
Mrs
McLeod: The commissioner did suggest that she and her
department would be prepared to work with us. As you know, we're
into a process where we're looking at consensual amendments where
that's possible, and I think that her input to that process would
be invaluable. I would like to recommend that we invite that kind
of participation after the hearings and as we get into an
amendment process.
The Chair:
Absolutely. We want input from all sources, but certainly the
privacy commissioner is in a unique position relative to this bill and we
would look for her specific feedback.
Dr
Cavoukian: We'd be very pleased, and we will be giving
you draft language.
The Chair:
That would be very helpful.
Ms Lankin:
I was going to ask, with respect to that submission of draft
language, if possible, could it be submitted prior to public
hearings and deputations that the committee will be receiving,
and second, if you have the capacity, to post such information on
a Web site, if you have one? You know there are stakeholders who
have very opposing views to some of the points that you're
raising.
Dr
Cavoukian: Oh yes.
Ms Lankin:
It would be helpful to us if they're coming not only reacting to
the bill but reacting to the advice that you're giving us with
respect to the bill, because I think the advice of the commission
does hold a lot of sway and the public should know about that and
be able to respond to that.
Dr
Cavoukian: We'll make every effort to do that.
Just let me conclude by
saying that we really need this bill. It's got to the improved a
lot. You've heard all the recommendations we have. But there has
been no greater need for such a bill as there is now. I urge you
to consider that. Thank you very much.
The Chair:
Thank you again for your time. We appreciate it.
Ms Lankin:
Do we have start dates for the hearings yet?
The Chair:
Yes. February 26.
MINISTRY OF HEALTH
The Chair:
Could we invite the Ministry of Health people back up to the
witness table. We might as well start off with the question Ms
Pupatello had raised. Seeing that all of the health ministry
staff were in the room at the time, presumably there is no need
to-
Ms Lankin:
After that are we going to revert to clause-by-clause?
The Chair:
We can go back to clause-by-clause, yes.
Mr Sharpe:
If you like, Mr Chair, I can start off and-
Mrs
Pupatello: Mr Jackson or Mr Sharpe, my question in
general was, what is it that we-the public, the government-cannot
do if the lockbox is in the legislation?
Mr Sharpe:
Let me again, as historian, talk about where we're at, and then
Mr Jackson-
Interjection.
Mr Sharpe:
What can I do? I'm supposed to keep my role clear here.
The instinct we all have of
course is that it's our information and it's very private and
personal. Why shouldn't we control where it goes and who
discloses it? Over the years of consultation we have heard from,
and you will hear from, provider groups strongly supporting the
position that the commissioner espoused as the rationale for not
having a lockbox, which is continuity of patient care so that
information within the health network can be shared on a
need-to-know basis by other providers to assist in looking after
patients. If the patient locked out important information, tests
would have to be duplicated and inappropriate treatments could be
given. That's what we were told, and ultimately were convinced by
those arguments, obviously, because the lockbox is not there,
although there are other controls there.
1540
I should say just as an
entrée, before Mr Jackson takes over, that for many years,
in my experience, we have enjoyed the co-operation and assistance
of the privacy commissioner's office. They have been very
supportive, as they were today, of the need to have this
legislation, and have been most helpful in a very constructive
and instructive way to our work. We look forward to their
invitation to continue to work with us to improve the bill.
Phil, do you want to take
over?
Mr
Jackson: Yes, just to specifically clarify on the
lockbox. The lockbox concept, as it was set out in the earlier
draft legislation, would have provided an individual patient with
a statutory right to withhold a certain piece of information from
the patient record. So basically we're talking about the
statutory right, regardless of format.
The examples that were
given-and the IPC has referred to other jurisdictions,
Saskatchewan, as an example, where a lockbox provision exists.
Now, the wording or the concept is being used in two different
ways. In Saskatchewan, it's basically the right to opt out of
electronic transfer. You're out of the electronic transfer, but
it doesn't mean that the information can't be shared by a
provider through a fax or through a paper record. It's a
different concept than the concept that was in the original
draft, which was a statutory right, regardless of the form in
which the information would be shared. So it's two different
pieces.
There's a specific question
around the lockbox and its potential impact on patient care. I
would suggest they are questions that you also ask the Ontario
Medical Association and other providers who will come to
present.
What has been articulated
to us is that the record itself, yes, is the record of patient
information, the patient's medical record, the record of
treatment for conditions the person has been diagnosed with. It's
also the information tool which a practitioner would use to
decide whether or not to prescribe a certain drug, whether or not
to recommend a certain form of treatment.
It's true that there are
different classes of information. Some information is considered
sensitive by society; some information is not considered
sensitive or is considered less sensitive. The question they
asked of us is, who is in the best position to determine the
clinical impact of removing that information? The way it was
articulated in the discussion documents and in responses we had
was that the health care practitioner is in the best position to
determine whether or not there is a potential impact on an
individual patient's care by the lack of full information in the
record.
That's to give you some of the background as to
why the lockbox was removed. What you have in Bill 159 now is not
a lockbox. First of all, it's the right of access to your own
record; the right to make a correction on your own record; where
there is a disagreement, the right to have an attached statement
of disagreement on the record. So it's not a lockbox. It avoids
the clinical complexity that providers indicated would be there,
having the statutory right to withhold information across all
uses. I hope that clears it up on lockbox.
Mrs
Pupatello: In summary, then, for continuity of health
care, duplication of use of the system, is that what you are
saying?
Mr
Jackson: Sorry, could you repeat the question?
Mrs
Pupatello: In summary, without the lockbox, presumably
we will have continuity of health care and no duplication,
because you're saying that the reason for having removed it was
continuity issues. People came to you and said, "You will have
optimum continuity, with no limitation, with no lockbox." They
said, "You can't get that duplication out of the system with the
lockbox."
For example, I can go to
three different doctors and get a prescription for Prozac. No one
is going to know. When the pharmacy fills my prescription,
there's no way to access that I haven't just filled this with
another doctor up the street. When we were discussing fraud
earlier, my sense was that you truly are looking at individual
fraud, not health provider fraud, but most use of the system in
that way. This kind of thing is what you perceive is preventing
that or allowing the pharmacists then to access that.
Mr
Jackson: No. I think the number one reason that was
indicated to us is the potential issue of clinical safety. Number
one, above all others, is the issue of whether, if that right
exists in legislation across all, you in effect-and the question
was raised-require a physician to undertake a diagnosis or
prescribe a treatment without access to the best available
information. That is one concern that has been raised.
On the issue of duplication
of resources, it's almost a separate question because the lockbox
issue, and I'd suggest that the committee will probably want to
hear from providers about this because it is a very complex area,
is about how much you can share and how much an individual
patient should have control over their own records. So I would
suggest it's from the health care providers that we heard
opposition to the lockbox. It's not primarily, from the
ministry's perspective, a way of either saving money or avoiding
duplication. The primary issue is what's the potential clinical
impact. Second, can it administratively be done? The issue there
is that the concept itself is quite new. When we talk about a
statutory block that would apply electronically, apply to paper,
apply to faxes, it would have to apply across the board if it was
going to be a tight scheme. How is that undertaken in a system
where information is transferred in multiple ways now? I think
the commissioner indicated some of the challenges around it.
We're currently in a situation where there's no single method of
transferring information. It's not an easy technological concept.
You'd have to ensure it was across the entire system.
So there is the operational
side of it. How would you operationalize the lockbox? One of the
challenges we face, and a corollary issue which needs to be
considered, is that there are US jurisdictions where they have
considered this approach but it often comes with a corollary of,
does the physician have the right to withhold treatment in the
absence of full information? That's the flip side of the coin.
When we've examined the issues, examined the responses,
ultimately seeing in place a full statutory lockbox, we've not
been in a position to say, "Where would this take us five years
from now? What would the potential clinical impact be?" We can't
honestly say we know the answer to that question.
Mr Sharpe:
Arguably, if you had a lockbox, then the exception we have to the
need for consent for continuity of care, which exists now in the
Mental Health Act and the Public Hospitals Act to some extent,
wouldn't be there because, if we're patients and our physician is
intending to send a summary of our condition to the next health
provider we're going to see or a discharge summary or whatever,
which they do today I understand fairly routinely, they couldn't
do that without letting us have a look at what's going to go in
draft so that we could exercise our right to lock out the
information that we consider to be very sensitive.
So administratively, as
Phil has mentioned, one now gets into a mechanism of having to
permit patients to exercise their right of access, which they
have under this bill with some limitations, and then the ability
to indicate which elements of their medical history are not to be
disclosed to anyone or to be controlled under some circumstances.
So then you might be imposing a consensual model on continuity of
care where very little exists today. As Phil says, whether that's
right or wrong, administrative hurdles should not be a barrier to
exercising fundamental rights if this is considered important.
But the concerns we heard came from the provider community. It
wasn't generated out of government.
1550
Mrs
McLeod: I hear what you're saying in terms of this came
from the health provider community and not from the ministry, but
in your transmission of their concerns to us I'm hearing that
paternalism that Gilbert began this morning by saying we were
trying to move away from. I guess if I think practically about,
"Is an individual going to consent to have transfer of health
information between the health care providers that he or she has
entrusted their health care to?" I think most often are going to
say yes.
What I think I heard the
commissioner say-I'm more persuaded by my colleague's argument
about repeated prescriptions for Prozac and that kind of thing;
that's kind of an intriguing subset of that in terms of
pharmaceutical record. I thought I heard the commissioner say
that Saskatchewan legislation has a lockbox only for the
transmission of electronic data and that the concern about how
electronic data, the whole smart card issue-this may be an issue of public
education, etc, but nevertheless it's a public concern. Are you
saying administratively that can't be done, that you can't put a
lockbox on the transmission of electronic data?
Mr
Jackson: In Saskatchewan, again, it pertains to
electronic transfer. I should get the clause so that you can see
the clause. The issue for committee to consider there is, if you
go the route of basically the right to opt out of electronic
transfer, from a system-level perspective, from a ministry
perspective, one of the issues related to that is that you
prolong dual record-keeping because there will be information
that's different between this file and the paper file. An
individual may be seeing multiple providers. They may be seeing
different providers for different aspects of care. That's from a
ministry level.
Mrs
McLeod: If I may, I understand that. I do think, as was
discussed earlier, that we're probably a decade away from having
physicians records in an electronic format anyway. But if we're
going to move that way, do we not also have to move some distance
in terms of our confidence in the patient and the patient's
buy-in to this new system? If we're talking about a new method of
delivering primary care and co-ordinated care and we're doing it,
not in the name of the ministry's concern for efficiency, however
that might be achieved at the end, but for continuity of care for
the patient, it seems to me that if the patient buys in, they're
going to buy in because they believe it's important to them and
because they have confidence in the way in which their data is
being handled. If they have that confidence, then they won't want
the lockbox provision.
It seems to me that somehow
we've got to have some faith at the end of the day that the
patient needs to buy into these new systems. I'm not sure I'm
hearing that in this bill.
Mrs
Pupatello: Can I add one element to that? That is with
regard to the physicians and their comments immediately after the
bill was tabled in the House. The primary concern for them is
that patient confidentiality information with their doctor and
the kind of relationship the doctor expects to have with his
patient, and that is full disclosure between the patient and the
physician. It seems, then, that the doctor was the protector of
the purse, if you will: "This is my client's record. I will not
let this client's record out except in a court of law when I'm
forced to."
It's sort of that same
sense of paternalism, I guess. You know, the doctor's got it all
and the doctor will give it back to the patient. Those time's are
long gone, I agree. We go in armed with 20 pages off the Internet
for a little consultation about an earache any more, as it should
be, I guess. So if there's no consent between the patient and the
doctor in order of full disclosure, the doctor, as it is today,
can say, "I am not prepared to treat you unless I have full
disclosure." So I'm consenting to give my doctor all this
information.
It's that same question I
asked the commissioner earlier about the forced nature of giving
consent. When you're under the gun, coming in the door on an
ambulance stretcher versus a walk-in, you know, I'm in pain,
whatever, the conditions are never right for me to have a good
sense of maybe I should be saying no right now to this consent.
The truth is, in the health system you usually are under some
level of duress and will give consent, in which case none of this
matters because it's all about when consent isn't given or when
they don't have to have this consent. So-
Mrs
McLeod: It's confidence in coercion.
Mrs
Pupatello: I know, it's going to happen. That's my
concern. That currently exists today. There's a coercion around
giving consent. If you are applying for a job, whatever it is, if
you say no or if you say, "I'm not answering," or if you say,
"This is what's going in the lockbox," that automatically gives
people the idea, "There's trouble with this file." It's implied.
I guess the point is, I don't know that this is going to resolve
any of that anyway.
Mr Sharpe:
The legal purpose of consent, of course, is to ultimately protect
providers so that if someone alleges they did something improper,
they'll say, "I had the permission of the patient to do it. I had
their consent."
Mrs
Pupatello: The patient will have to say, "I had no
choice but to give consent."
Mr Sharpe:
There are elements of consent that we've articulated in the
legislation that are modelled on the Health Care Consent Act that
include informed consent as an important ingredient, which has
not been clear in the confidentiality area, but we're hoping
we'll make it relatively clear now.
One other element is the
voluntary nature of the consent. It's for the provider to decide
whether the coercive aspects of the circumstances are so severe
that they would cancel the voluntary nature of the consent and
therefore the consent is useless as a protective measure for the
provider. That's for them to decide.
There's a certain coercive
element in any of us being in the emergency room of a hospital.
We've all looked at our applications for insurance and the couple
of lines that we sign at the bottom where we consent to
everything and anything being disclosed. As a lawyer, it's likely
that this consent would not protect anyone if there was any
action ultimately, although providers and records departments of
hospitals will rely on that signature on the bottom of the form.
It's certainly not informed; it's likely coercive; it's probably
not voluntary. It doesn't meet any of the tests, but we all sign
it and information is given in reliance on it.
When I said this morning
that I think sometimes we have to look at what existing practices
are-those aren't good practices. We're hoping this type of law
will make insurance companies and others pay a bit more attention
to the types of consent they're requesting from individuals,
because providers will find it more difficult to rely on those
two lines under these circumstances.
Again, to get back to
your-
Mrs
Pupatello: Just on that note, I have to say that even
if, as a function of this act being passed, this slow movement
into the community at large and affecting how private companies do their
business, the insurance company will then be restricted from
asking detailed questions, they may not be restricted from
saying, "Would you consent to the release of information?" As
soon as you say no, you're in the same coerced position as you
were to not answer the series of 20 questions. They're just going
to make the form shorter, to one question, and that one question
is, "Will you give us information?" and if you say no you won't
get coverage, as opposed to 20 questions on your historical
health data.
My frustration is that you
elect to bring in a bill after 20 years of work to address a
whole host of areas that are of significant concern and there
isn't really an example yet where I can see that life is going to
be better after this bill is passed.
Mr Sharpe:
We're hoping on the insurance example that what the providers
will say when this little two-line consent comes in is, "This is
no longer sufficient because the individual clearly has not
understood the full gamut of what it is we're about to disclose
as a provider and as a custodian of their information."
As an example, some years
ago when I was doing counsel work for the government's
psychiatric hospitals, the head of clinical records at one of the
government facilities called and said, "I have an insurance form
here and the questions that the insurance company asked are as
follows. If I disclose this information and I have this consent,
it's going to be very prejudicial to this ex-patient and I'm sure
they're not aware of what's in this record and what I am about to
release. What's your advice?"
We don't have this type of
law now, so they could probably rely on this inadequate form, but
I suggested they try to locate the ex-patient and have a
discussion with them about what it is they've consented to and
what's about to go.
A couple of days later I
got a call back from this person and she said, "I had the
discussion and the ex-patient has decided to withdraw their
consent." What that means in terms of their application for
coverage is, of course, their right to make that
determination.
It was with that in mind
that we tried to put some of this together.
Mrs
Pupatello: It's a perfect example of how this bill is
not going to change that outcome.
Mr Sharpe:
We think the bill will, because it's going to require that
custodians be mindful of appropriate full consents before they
release patient information.
1600
Ms Lankin:
I think it would be really helpful, even though there's limited
experience, if we had some descriptive information about the
application of this, because in fact it is not clear in certain
jurisdictions that there is even a flag when a file is
transferred to a referral doctor that there is a piece of
information that is locked away and is being kept from you. So in
terms of how the insurance company would know that it's not the
full record, it's not clear until they devise a form which says,
"You're not going to get this coverage unless you tell us whether
you've locked something in a lockbox or not." I think there's a
lot we don't know about how it could practically be implemented,
and there are presumptions in what all of us are saying, that it
would be very useful for jurisdictions that are actually living
with it to have some descriptive information from that.
I want to come at this from
two other perspectives. I think there are many things in the
clause-by-clause that I hope to get to, if not today then
tomorrow, but this piece obviously is really controversial and
it's quite key I think to the future of health systems reform and
where we're headed with things.
Sandra's description and,
Gilbert, your historical perspective of the move from paternalism
to where we're headed-in the course of changes in the health
system, one of the key things is the emergence of the patient as
the centre of the system and informed consent, for example:
"informed" consent, the right to informed consent, the right to
advocacy, to challenge, the right to challenge declarations of
your competency. There is a shift that is taking place. There's
also a shift in terms of public attitude about what types of
services they want to access. There's a shift in terms of health
reformers looking at how services should be organized. Primary
care reform comes to mind as an example.
In that, and this is very
controversial for some providers, in particular medical doctors,
the medical doctor is no longer the gatekeeper to the system. The
patient becomes the informed decision-maker who interacts with a
range of health care professionals and providers currently inside
and outside of the existing health care system.
If you conceptualize the
health care system that way, the existing record-keeping that we
have is so antiquated and there's much that we have to determine
beyond the ability for me to put a single piece of information in
a locked box. There's a question, in moving to smart card
technology, where I hold my file, of who has the need to know.
It's a series of locked boxes. It's a file cabinet with a series
of drawers, and in those drawers a series of files, all of them
locked, with only certain individuals within the system on a
need-to-know, with my consent, basis to access that information.
Surely that's what we're going to get to. You can't go to smart
card technology without having someone the keeper of the
controls. I don't think society will accept that it will be a
single health care professional. It's got to come back to the
patient. So I think we have to have a much broader view of this
concept of lockbox. These words have emerged just in the last
little bit. It sort of reminds me of the US presidential
election. Health care and that lockbox is annoying, actually,
because it is a tiny baby step on the road to controlling the
electronic transfer of information to give some patient control,
and it does not acknowledge the complementary medicines, that
people are going to want to have their information carried with
them, the physiotherapy support they're receiving and what they
need to access in terms of background information and what they
shouldn't access, the pharmacist and on and on. Our framework has
to be prepared to have the controls in place to answer that when that
technology is available, and I think we fall way short of it
here.
I don't know how we move
that issue forward but that to me is where the legislation has
got to get to. Otherwise, even though this is really critical and
a really important first step, we're not going to be able to do
what we haven't been able to do for the last how many years we've
been looking at this smart card technology. We can't do it
because we don't have the framework in place. This isn't the
framework that's going to allow us to do it either. I don't know
if there are any thoughts back from the ministry.
Mr
Jackson: It's extremely difficult to be crafting a piece
of legislation that is responding to the multiple manners in
which information is transferred now. So there would have to be
consideration to, is it realistic given the world of largely
paper records that we've got now? Is it realistic considering the
emerging world X years from now?
On the one hand, there is
the temptation to say, "Yes, the bill needs to be
forward-looking; it needs to anticipate the changes in the way in
which health care is delivered." It also needs to be workable on
the ground for it to effect change in the way in which
information is managed and used. That balance is a hard one to
achieve because, as a number of people have spoken to, the use of
electronic transfer is, relatively speaking, in its infancy in
terms of the number of health care providers routinely using it.
Is it going to grow? Yes. Can we anticipate how it will grow? No.
That's one of the difficulties. We can't anticipate the twists
and turns. So it does come back to, how specific can you get in
this type of legislation that may apply 10 years from now if it's
passed, when the very mechanisms by which information is
transferred are still evolving? It's not a specific-
Mrs
Pupatello: Can I ask a question? What if the entire
Ontario population decided to lock everything in the box, if you
had the box, or if everyone in the province agreed to no consent
for anything? What would the outcome be? Ultimately, if there's
enough of an awareness in the population, a sensitivity around,
"You own your data"-my view is that currently the general
population, unless you are faced with this and something ugly
really does happen, we don't understand the value of what it is
we hold and our right to our information. There needs to be a
better awareness of that out there. But if because of this it
becomes an issue and everyone determines that "You will have no
information from us," then the government's ability to plan, the
government's ability to do reviews and research and all of that,
would be stymied. As the commissioner mentioned, just a little
group of those that would say no to data could change the outcome
of research being done.
Mr Sharpe:
I suppose if everything was locked away, then every time he saw a
provider-a physician, an alternative therapist, whatever-the
patient would have to give information to that person and they'd
use it for the purpose of that one interaction, and then when you
see someone else you'd start anew with that other person, and
when the lab was going to do a test, you'd have to consent to the
lab giving the information. That would be the process.
Mrs
Pupatello: It seems that they're talking about these
rostered groups of doctors. If you don't have this, you can't do
that. The government has moved in this pilot project area that
the group is to be penalized when people exit the group and go
get health care elsewhere other than the group. We've got issues
of doctors refusing patients, and especially in an underserviced
province that's a difficulty we face already. But if that
rostered group has their set group of patients that they see,
they won't know that the patient is going outside the circle for
actual care and therefore the government can penalize the
group.
Ms Lankin:
OHIP.
Mrs
Pupatello: On a certain instance they would know.
Ms Lankin:
You can't lock-box OHIP information.
The Chair:
Mr Wood has questions. Was that a formal question or a
musing?
Mrs
Pupatello: If you know it through OHIP, then why do you
need to know more, if you can do it without it? I guess that's
back to the issue that Dr Schumacher brought up initially. You
have access to everything you need to essentially now. I'm
saying, what if information was presented to you that that wasn't
the case?
1610
Mr Sharpe:
The discussions about integrated systems and restructuring and
all of those things, Phil, you could address.
Ms Lankin has raised a
fundamental question: does the patient or the provider ultimately
control the information? I think right now the gatekeeper is the
provider, particularly the physician. It's their record. They
make the determination who should get it and how much they should
get. What does the pharmacist need? Not the whole record, but
some information. The lab gets less. Another provider may or may
not require anything, depending on the circumstances. If we move
that around to a situation where it's the patient making the
ultimate call on who gets what, that would be a shift in ethics
and principles from the way the world works today in health care.
So it is a pretty basic question.
Ms Lankin:
You can't have smart card technology without answering that
question. That's the point I'm making.
Mr Wood:
Could you tell me who would be able to give consent for an
incompetent person under the bill? Would it be the personal care
power of attorney or the property power of attorney?
Mr Sharpe:
There's a list of substitute decision-makers that's based on
existing law, the Health Care Consent Act, and it goes to a
gradation of individuals. If there is a power of attorney for
personal care, if there is an appointed substitute, if there is a
legal guardian for personal care, they would kick in. In some
circumstances, the individual can select someone through that
process or through another tribunal process to make the
determination. Failing
those categories, it goes into a list of relatives and a certain
priorization that's been in our law for many years.
Mr Wood:
Does the person who holds a property power of attorney have any
status in this scheme?
Mr Sharpe:
Not property; they'd have to have it for personal care.
Mr Wood:
Do we have any means of ousting the application of C-6 other than
showing that this act is substantially similar?
Mr Sharpe:
No. If there was clear conflict in provisions and if we were
looking at whatever commercial means-we're still not sure to what
extent that applies within the province, but if it were several
years from now and there was a conflict and some concern around
it, it might become a matter legally of paramountcy and
constitutional law as to which level of government ultimately can
impose its will in these circumstances. One would hate to have to
get into that type of conflict, and every effort is being made to
avoid it.
Mr Wood:
What do you consider we would have to have in this bill to make
it substantially similar to C-6? What are the key elements you
consider would have to be in there?
Mr Scott:
On the issue of substantial similarity, the federal cabinet has
not given any firm direction to date. There is no definition in
the legislation that indicates what substantially similar
legislation is, which does make our assessment of it slightly
more difficult in terms of what the requirements would be.
Around the time Bill C-6
was enacted, then-Industry Minister John Manley suggested several
criteria which should be followed by the provinces when they are
determining whether their legislation is substantially similar.
The three criteria he listed at that time were a basic set of
fair information practices that are consistent with the CSA
standard, oversight by an independent body, and redress for those
who are aggrieved. Those were the criteria he indicated before
the Senate standing committee on science and technology back in
December 1999, but it is, again, somewhat difficult for the
province to assess that in light of the fact that there is no
definition of the term in their legislation and it is ultimately
a decision for the federal cabinet.
The Chair:
Thank you. Mr O'Toole.
Mr John O'Toole
(Durham): I first want to apologize. I'm a sub on this
committee. I'm just generally very interested in the issue. I
just want to bring myself up to date without repeating, I'm sure,
what all the other astute people have observed. The key operative
words here, "collect," "use," and "disclose," are in some
respects in place today, I suspect; however, there may be some
rules-and I'm thinking that we're dealing with the medium by
which those things are dealt with, moving to digital and
interactive. Is it a fair assessment to say that there are some
disclosures and disclaimers and sharing protocols today that are
in need of refreshing? We're talking substantively about a medium
of exchange, the digitization of information. Is that sort of a
brief-
Mr
Jackson: Just in terms of the thinking behind the way
the legislation is currently crafted around Bill 159, it's
crafted to cover the collection and use of disclosure of personal
health information regardless of the means of transmission of
that information.
Mr
O'Toole: I appreciate your expertise; I've listened,
from time to time, in prior situations, to your insight into this
debate. If someone starts with the premise that we're somehow
creating some inflexibility in the system, that's problematic for
a lot of reasons-not just research, but for me getting the right
help at the right time in the right place, in a timely
matter.
I want to just look at, if
we're applying it to a medium which is today's kind of pencil and
paper mode or voice recorder with secretary mode-with assistant;
pardon me-that stuff isn't very secure today, actually. It's
lying around in various cupboards and files. If you really had a
look at it, you'd say, "Where is it?" Isn't that a problem today,
getting it? Isn't it important to organize it so I get the right
help at the right time, blah, blah, blah? Isn't that what we're
trying to do, without all the Big Brother connotations of the
media genre?
Mr
Jackson: I think it's fair to say that the thinking that
has gone into the bill to date is that it should cover the issue
of the files that are left open and it should be able to
anticipate and respond to the changing ways the information moved
around the system. In that, the impact to an individual of an
inappropriate disclosure of personal health information, the
potential impact to an individual is comparable where a file is
badly disposed of, is improperly held by a custodian, or where
it's inappropriately electronically shared. What Bill 159
contains within it for the first time is the elevation, for
example, in the area of computer matching. It is an attempt to
modernize, take what's currently in policy, bring it up into
legislation and elevate the place of that sort of activity in the
legislation. That's one attempt to anticipate the way the system
may evolve.
It's also the case that
there is a provision in Bill 159 which allows for the creation of
specific rules pertaining to electronic transfer of information.
The challenge around crafting those in detail now, as a number of
people have said and the commissioner referred to earlier, is we
are probably 10 years away, maybe more, from knowing what exactly
that system is going to look like. So in terms of the specific
rules regarding electronic transfer, first you need the broad
parameter in place that says, "No matter how you share it, these
are the principles we expect you to follow." That's the general
limiting principle which is set out in section 12.
You then, ideally, would
need the ability to come back and put in specific protections and
specific regulations to address emerging areas of information
transfer. This area legislatively is extremely new. Jurisdictions
all over the world are grappling with the same question: how does
law keep up with emergent technology.
Mr
O'Toole: I appreciate this debate. I'll tell you, in
some respects I'm looking at the UN lead, because this isn't just
an Ontario issue. I'm sort of familiar, through Gilbert and others, with the
C-6 initiative and its lack of translation or lack of clarity, if
you will, but you have given a two-year window here for
subordinated governments to do some things which you-I commend
you-are trying to do under some guidance to deal with where we
are and where we might be. Have you looked at best practices and
other jurisdictions? Spain has done an international health card
dealing with some of the privacy stuff. There are other practices
going on. Have we examined that in some expertise?
Mr Sharpe:
Professor David Weisstub is here. Some of you may remember
Professor Weisstub from his work on international comparisons on
Brian's Law. He has been involved for some time in looking at
international jurisdictions and developing a comparative
analysis, which we hope will be of assistance to this committee
when we get further down in our process. So we are involved in
looking at that type of experience worldwide, in other provinces
and in other countries.
1620
Mrs
McLeod: I realize we have abandoned clause-by-clause in
any systematic way, so I'll leap into section 48. I want to raise
with you an issue of right of access to your own records. I think
this morning you talked about the fact that that was one of the
things the acts ought to do, provide a right of access, which is
now only available under I think the Mental Health Act, and you
may have mentioned another one.
This bill, as I understand
it, considerably narrows the right of access to a health record.
It applies to all health records, whereas the Mental Health Act
obviously applies only to mental health records, but the way in
which you can be refused access, the amount of time that a health
care provider can decide, my understanding is-we've already
talked about that. We don't have the comparison with other acts
that would help us with this.
If I look at subsection
48(1), and the number of reasons why the health information
custodian can refuse to grant an individual access to a record of
personal health information, it's a little bit of the paternalism
again. How much do we say can be done in the name of protecting
an individual, including in this case denying the individual the
right to see their record because there is a sense that harm will
be done? The Mental Health Act I don't think has those kinds of
limitations on your right to access your records.
Mr Sharpe:
The Mental Health Act deals essentially with 48(1)(a), which is,
"could reasonably be expected to result in harm to the treatment
or recovery of the individual, injury to the mental condition of
another individual or bodily harm to another individual." That's
language that was placed there in the 1980s. You're right; the
other provisions don't exist in the Mental Health Act.
The other thing that's in
the Mental Health Act, further on, is the reverse onus, so that
if the patient is requesting the information, the obligation is
on the provider to justify why they're refusing, not on the
patient to show why they want it. So that's here.
Where these other
provisions largely come from is the Freedom of Information and
Protection of Privacy Act sections dealing with access. We tried
to harmonize this with other provincial law where you're dealing
with access rights, and probably a number of these exist in any
event. Solicitor-client privilege, for example, would probably
override concerns here. But much of this was taken from the
current freedom of information legislation.
Mrs
McLeod: I really need to understand this. We're talking
about a person's own health record. We're not talking about
disclosure to somebody else. We're talking about the right to
know what your health record is. Help me understand what legal
proceeding or solicitor-client privilege could say, "I'm sorry,
but you're going to end up in court and we're not going to tell
you what evidence is going to be produced that's on your own
health record." Under what circumstance would that ever be called
on?
Mr Sharpe:
It might not be the privilege of that patient, but often records
will contain information about other people or disclosed by other
people. That's why one of the provisions here talks about "an
unjustified invasion of another individual's personal privacy."
There may be privilege issues where lawyers are representing
others. There might be family relationships and disputes
involved, custody matters where a health care provider has been a
therapist to a number of individuals in the family and they have
a collective record. We were trying to embrace all notions of
privacy protection for individuals in addition to the
patient.
There is no question that
the patient should have a right to information there about them,
but often in the record there will be information about others,
and other family members.
Mrs
McLeod: But it's possible to draft legislation that
could specifically say that you don't have a right to access
information related to other individuals but you still have the
right to access your own information. I'm not even sure, in this
day and age, as we draft new legislation that supposedly has a
little more recognition of individual rights, that subsection
1(a) has relevance. Who is protecting whom for what reason?
Ms Auksi:
Could I just give one example that has been given to us? You
might have a record of someone where, when they were a baby,
let's say, there were some problems in the family, and a lot of
the family dispute information is on the record, perhaps very
painful information that it would be painful for the parent to
have that child know when they become an adult. That could be
considered an invasion of the parent's privacy. It would have
been relevant to the care of the baby, let's say, at the time the
record was made and of course if someone is trying to extend this
exception too far there is the ability to complain to the privacy
commissioner, with full rights of investigation and potentially
overriding the refusal.
Mrs
Pupatello: May I ask a question?
The Chair:
Mrs Pupatello.
Mrs Pupatello: I asked a
question earlier about Ontario Works and the ODSP. Currently,
when people are applying to access ODSP, the individual who makes
the decision about whether an individual is disabled enough to be
on ODSP is not a doctor, yet they're dealing with health
information in order to make that determination. We had pointed
out earlier where that act supersedes this act. That
administrator, who is making a significant health decision
whether someone is going to access disability or not through
ODSP, are they covered in any current act anywhere that protects
that information?
Ms Auksi:
This act would apply only to the extent that if information is
disclosed by a health information custodian to that system, the
so-called recipient rule, which I don't know we've talked about
today, in section 24 would apply. It might be a good time to take
a look at that. If you could turn to section 24.
Mrs
Pupatello: What page is that?
Ms Auksi:
It's on page 25. This speaks about something that was alluded to
earlier, where the act does extend some protection where a
disclosure is made even to someone who is not a health
information custodian, so this would apply if it was to an
insurer or to workers' comp, to Ontario disabilities, whatever,
to any-
Mrs
Pupatello: If you were to turn that around in that
instance, using what you are saying now about people not being
health providers, the individual who's making the application to
ODSP could refuse to give information to an individual who isn't
even a health provider-because it's an administrator who's
determining that they qualify for ODSP-and on that basis of not
providing information they would be refused access to ODSP.
Ms Auksi:
That definitely would not be governed by this act. That would be
governed by the rules of that legislation-
Mrs
Pupatello: The Ontario Works or ODSP-
Ms Auksi:
Right. I'm not sure exactly how the freedom of information and
protection of privacy legislation might apply as well, with
respect to some parts of that program.
Mrs
Pupatello: Do you think it would be under municipal
employees'-
Ms Auksi:
Do you know what? I'm not sure off the top of my head whether
it's the municipal or the provincial, but it would not be subject
to this act. What would be subject to this act is if information
flows from a health information custodian who is governed by this
act, like a health care provider, to that program, it would be
limited in the hands of the recipient to being user-disposed only
for the purpose for which the custodian under this act was
authorized to disclose it to them or for a directly related
purpose or a purpose to which the individual consents or a
purpose authorized under some other law. That other law might be
that legislation or it could be some other legislation if it's
applicable, but getting it from a health information custodian,
the recipient would not be free to do just anything with it;
there are restrictions.
Mrs
Pupatello: I guess I was just looking at when we went
through that bill in 1997 and the impracticality of a non-medical
person making a decision over whether someone is disabled enough
to access ODSP. The whole thing was completely bizarre to me. It
didn't seem to be so to any government member. The bill passed
and it now is in operation, where an administrative
manager-non-medical personnel-goes through a file and determines
that someone is disabled enough to get ODSP. It's ridiculous.
Having said all that-I
realize this is all about privacy and disclosure etc, but there's
no way to determine that the individuals who are getting access
to private information who aren't necessarily medical, just like
the insurance companies do-even an administrator of a welfare
program or whatever you want to call it is accessing information.
You're suggesting they may be covered or safe in that they only
use the information to deal with for the purposes of which they
act, not the inappropriateness of a non-medical personnel
individual.
Mr
Jackson: We can't speak to the appropriateness of the
administration.
Mrs
Pupatello: You could speak to the inappropriate
nature.
Mr
Jackson: I will speak to the way in which the recipient
rule works.
Ms Lankin:
Can we continue tomorrow?
The Chair:
I think we will. In deference to the committee members, who have
already gone a half-hour over, I believe it was the consensus of
opinion and I believe the ministry agreed that they were amenable
to returning at 2 o'clock tomorrow afternoon.
Ms Lankin:
Mr Chair, could I just ask on that front, why 2 o'clock? That's a
two-hour lunch, and I'm wondering whether-I, for example, would
be happier if we shortened the lunch period and got through as
much as possible and then also as early as possible, provided
afternoon commitments-
The Chair:
I have no problem with that. I would just raise the concern that
if the federal privacy commissioner ran late it would reduce our
flexibility to deal with questions there, but if you'll-
Mr Wood:
How about starting at 9?
The Chair:
Well, he's coming from Ottawa. The federal witness is coming at
10 o'clock tomorrow.
Mr Wood:
Why don't we have these people come at 9 and hear them for an
hour?
The Chair:
I'm in the hands of the committee.
Mr Wood:
I'd come at 9. We have a number of-
Interjections.
Ms Lankin:
What if we ask them to be here for 1 o'clock? If we go over with
the federal commissioner we might say 1:15 and ask you to wait a
little bit, but let's try now for 1 o'clock?
The Chair:
All right. It's agreed? The health folks will reconvene here at 1
o'clock tomorrow? Excellent. With that, the committee stands
recessed until 10 o'clock tomorrow morning.
