Accessing Health and Health-Related Data in Canada

Summary

Canadians care deeply about health care—for themselves, their families, and their communities. Ensuring that the healthcare system can deliver the best possible care depends fundamentally on research that is supported by high-quality data. Much of the data relevant to health research arise from interactions within the health system—every encounter with a physician, a pharmacist, a laboratory technician, or hospital staff generates data. In the last several years there has been an explosion in the sheer volume and variety of health data. In addition, advances in information technology are making available new ways to manage health data. Understanding the best ways to access, store, and govern these data is an important issue for Canada and Canadians.

In an effort to obtain the latest evidence on the subject, the Canadian Institutes of Health Research (CIHR) asked the CCA to assess the current state of knowledge surrounding timely access to health and health-related data—key for both health research and health-system innovation.

Key Findings

Accessing Health and Health-Related Data in Canada examines the technological and methodological challenges of accessing data, the benefits and risks of such access, legal and ethical considerations, and best practices for governance mechanisms that enable access. This report provides a foundation of knowledge that will support policy makers, administrators, clinicians, and researchers in health-related fields who seek to improve the delivery of health and social services to the public.

• 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.