In 1998, the now defunct Medical Research Council Standing Committee on Ethics established a Sub-Committee on Legislation (SCOLEG) to advise on existing and proposed legislation related to health research. Under the leadership of Justice T. David Marshall, SCOLEG resolved in February 1999, to focus on the protection of personal health information in health research as one of its priorities. It commissioned the completion of a legislative compendium as a working and communication tool and identified the need for a Workshop to initiate dialogue between stakeholders. A Planning Committee was struck and the Workshop was scheduled for early June 2000 in order to allow for the timely completion of a synthesis of proceedings in the fall.
A Workshop entitled, "Personal Health Information: Balancing Access and Privacy in Health Research", sponsored by (now) CIHR was held June 3-4, 2000 in Toronto (see Appendix A).
Forty-five participants attended the Workshop from a wide variety of disciplines and with many different interests (see Appendix B).
The objective of the Workshop was to initiate dialogue as a first step in advancing the current debate in Canada and mobilizing the health research community towards the ultimate goal.
That ultimate goal is to provide effective input into policy-making processes respecting the protection of personal health information in health research.
The challenge lies in respecting the right of Canadians to have their personal health information kept private, while also enabling access to that information by health researchers and managers seeking to better the health of Canadians, improve health services and maintain the sustainability of our health care system.
EXPECTED DELIVERABLES
The expected deliverables of the Workshop were identified as follows:
specific recommendations on points of consensus, if any;
a clear articulation of the issues, with some suggestions on processes for resolving those issues;
prioritization of areas requiring further study perhaps including some commitments from participants to begin work in these areas.
PARTICIPANTS
Forty-five participants attended the Workshop, with a wide cross-section of expertise, many different interests and varying levels of sophistication in specific areas. These included:
data holders/managers (CMA, CPhA, IMS Health Co., health institutions, CIHI, Statistics Canada);
data users (researchers in epidemiology, health services, pharmaco-economics, population health, pathology, hematology, community health, women's health etc.);
data subjects (Consumers Association, Public Interest Advocacy Centre, consultant in psycho-social oncology and palliative care, lay member of an REB);
data regulators (privacy commissioners, Health Canada, Industry Canada, REB chairpersons) and,
other participants from the fields of ethics, law, public policy and privacy enhancing technology.
Document: Personal Health Information: Balancing Access and Privacy in Health Research
Appendix A
Appendix B
Appendix C
Appendix D
