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

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.