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Secondary Use of Personal Health Information in Health Research : Case Studies, Canadian Institutes of Health Research. Public Works and Government Services Canada, 2002

Institutes of Health Research. Public Works and Government Services Canada, 2002

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Link: http://www.irsc.gc.ca/e/1475.html

The Canadian Institutes of Health Research (CIHR), formerly known as the Medical Research Council, is the Government of Canada's agency for health research. Its objective is to excel, according to internationally accepted standards of scientific excellence, in the creation of new knowledge and its translation into improved health for Canadians, more effective health services and products and a strengthened Canadian health care system.

Under the guidance of the CIHR Ethics Office, this compendium of 19 case studies describes real-life examples of actual research involving secondary uses of personal health information (PHI) in Canada. These case studies detail the kind of PHI researchers need and why. They explain how researchers have collected, used and disclosed PHI, and what safeguards have been taken to protect privacy. Considered in the light of existing laws and ethics guidelines, these case studies highlight the challenges that researchers, data custodians and ethicists face when applying legal and ethical norms within the context of specific research projects. Research projects that are reviewed include:
  • A diabetes surveillance system
  • A molecular epidemiology project studying TB transmission among HIV patients
  • Spatial surveillance of cancer clusters
  • Cancer risk among a cohort who received medical implants
  • Patterns of hospital utilization
  • A case-control study of second cancers among patients treated with radiotherapy for first cancers
  • A population health survey
  • A familial cancer registry
  • An RCT of hard-to-reach women for Pap smears
These CIHR case studies provide concrete illustrations of the importance of interpreting and applying privacy laws and policies in a flexible and workable manner, in order to permit societal benefits from health research to accrue. These case studies will be of value to the health research community, data custodians and Research Ethics Boards (or IRBs) for training purposes, and to serve as a stimulus for active discussions with privacy advocates, consumers and the general public in identifying and implementing effective strategies for balancing the privacy right of individuals with their desire for improved health and more effective healthcare services.