Accessing Health and Health-Related Data in Canada: The Expert Panel on Timely Access to Health and Social Data for Health Research and Health System Innovation

Andrew K. Byerring, Marni Brownell, Khaled El Emam, Isabel Fortier, David Henry, Bartha M. Knoppers, Graeme Laurie, Trudo Lemmens, Matthew Morgan, Thomas William Noseworthy, Stephen Saunders, Michael Wolfson, Jennifer Zelmer

Research output: Book/ReportCommissioned report

Abstract

Key Findings

For effective research with health and health-related data, disparate sources of data must be brought together. Providing these data in an “analysis-ready” format, thereby allowing statistical relationships or patterns to be derived, is a central methodological challenge.

Evidence shows that timely access to data enables significant high-quality research that can have far-reaching effects for health care and the overall health of Canadians.

The risk of potential harm resulting from access to data is tangible but low. The level of risk can be further lowered through effective governance mechanisms.

Timely access to data is hindered by variable legal structures and differing interpretations of the terms identifiable and de-identified across jurisdictions. Instead of rigidly classifying data as either identifiable or non-identifiable, it is useful to view de-identification as a continuum and to adjust access controls accordingly.

Evidence demonstrates that a shift is occurring among leading entities from a 'data custodianship' model to a 'data stewardship' model. Central to the success of this shift is the adoption of good governance practices, specifically in privacy governance, research governance, information governance, and network governance.
Original languageEnglish
PublisherCouncil of Canadian Academies
Commissioning bodyCouncil of Canadian Academies
Number of pages260
ISBN (Print)9781926522050
Publication statusPublished - 31 Mar 2015

Keywords

  • Medical records-access control-Canada
  • Medical records-Law and legislation-Canada
  • Data protection-law and legistlation-Canada
  • Medical records-management-Canada
  • Right of Privacy-Canada
  • Health-Research-Canada

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