Health Research and Health System Planning and Analysis
| Author | Halyna N. Perun; Michael Orr; Fannie Dimitriadis |
| Pages | 442-486 |
11 Health Research and
Health System Planning
and Analysis
442
1 Office of the Prime Minister, News Release, “A 10-year Plan to Strengthen Health Care”
(16 September 2004), online: [10-
year plan].
2 According to the report, “If we are to build a better health system, we need a better
information sharing system so that all governments and all providers can be account-
able to Canadians.” Canada, Commission on the Future of Health Care in Canada,
Building on Values: The Future of Health Care in Canada (Ottawa: The Commission,
2002) at xix. See also Chapter 3 of the report.
A. GENERALLY
It is clear that the collection, use, and disclosure of personal health information
is crucially important for the provision of health care. However, there is also
widespread recognition that personal health information is essential for a num-
ber of secondary uses of great importance, including health research and health
system planning and analysis. Most recently, the First Ministers noted the need
for such secondary uses as part of their ten-year plan to strengthen health care.1
The First Ministers recognized the need to collect meaningful health informa-
tion to assess progress made in achieving improvements in the health care sys-
tem, such as reduced wait times. This recognition built on comments included
in the report of the Commission on the Future of Health Care in Canada, which
highlighted the importance of better information sharing systems to govern-
ment and provider accountability to Canadians.2The Information and Privacy
Commissioner has also acknowledged that activities like health research are
vital to the development of new treatments and cures for diseases.3
It is not always possible to carry out health research and health system
planning and analysis on the basis of de-identified information. Identifiers are
often necessary to link various records of personal health information about a
patient. Health research often requires accessing records from many custodi-
ans, such as hospitals, laboratories, and physicians. Linking permits the study
of relationships between certain health determinants and health status. Link-
ing also permits the tracking of patients over time in order to study the evolu-
tion of certain diseases after long latent periods or to assess patients’ progress
over the continuum of health care.
tance of health research and health system planning by allowing limited use
and disclosure of personal health information for such secondary purposes in
a manner that also protects the privacy of the patients whose information is the
subject of the use or disclosure. This balance is accomplished with the involve-
ment of such bodies as the Information and Privacy Commissioner, research
ethics boards, prescribed health registries, health data institutes, and pre-
scribed planning entities. This chapter explains the roles of such bodies in the
context of health research and health system planning and analysis.
B. RESEARCH
1) Background
PHIPA includes special rules concerning the use and disclosure of personal
health information for research purposes. These special rules reflect the
importance of health research in the steady improvement in health care capa-
bilities, which benefit us all. The research rules in the Act reflect an effort to
harmonize as much as possible the protection of the privacy of personal health
information with the public interest served by health research.5
Health Research and Health System Planning and Analysis 443
3 Information and Privacy Commissioner/Ontario, Frequently Asked Questions: Health
Information Protection Act (13 August 2004), online:
tion: “Why do we need a health privacy law in Ontario?”
4 S.O. 2004, c. 3, Sch. A [PHIPA].
5 It is interesting to note that PHIPA’s requirements with respect to a health informa-
tion custodian’s use and disclosure of personal health information for the purpose of
carrying out research are largely consistent with recommendations in the Krever
Report: Ontario, Royal Commission of Inquiry into the Confidentiality of Health
2) Application of Requirements Related to Research
a) Application of Requirements to De-identified Information
Health information custodians and researchers should remember that the
research rules found in PHIPA do not apply to the use and disclosure of infor-
mation that is not personal health information within the meaning of the Act.
Therefore, the research rules do not apply to a health information custodian’s
disclosure of aggregate or statistical information that is not personal health
information, such as information that has been de-identified.6The definition
of the term “personal health information” is important in this context.7
b) Application of Requirements Where Consent Is Obtained
Likewise, health information custodians and researchers should keep in mind
that the research rules found in PHIPA only apply to situations in which a
health information custodian uses or discloses personal health information for
the purpose of carrying out research without the consent of the patients to
whom the information relates.8It is not necessary for health information cus-
todians to comply with the research rules set out in the Act where the use or
disclosure occurs with the consent of the patients to whom the information
relates. Consent is an alternative authority for the collection, use, and disclo-
sure of personal health information for the purpose of carrying out research.9
A health information custodian may use a patient’s name and contact informa-
Guide to the Ontario Personal Health Information Protection Act
444
Records in Ontario, Report of the Commission of Inquiry into the Confidentiality of Health
Information (Toronto: Queen’s Printer, 1980) vol. 3 at 51, Recommendation 94.
6PHIPA, s. 47(1) defines the term “de-identify” to mean “in relation to personal health
information of an individual, [which] means to remove any information that identifies
the individual or for which it is reasonably foreseeable in the circumstances that it
could be utilized, either alone or with other information, to identify the individual”
and “de-identification” has a corresponding meaning. Although defined in the context
of the Act’s rules for the Minister’s directed disclosures of personal health informa-
tion to a health data institute, the term “de-identify” is useful more generally to com-
municate in a precise way the idea of modifying personal health information so that it
is no longer personal health information. See Chapter 2, Section C(1)(d) for a discus-
sion of de-identified information.
7 See Chapter 2, Section C for a detailed discussion of what constitutes “personal health
information.”
8PHIPA, ss. 18(2) & (3). A health information custodian who discloses personal health
information about a patient to a researcher for the purpose of research may rely on
the patient’s express consent to make the disclosure. A custodian may collect and use
personal health information about a patient for the purpose of research, however, on
the basis of the patient’s express or implied consent.
9Ibid., s. 29.
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