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
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.
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What is the current state of knowledge surrounding timely access to health and social data for health research and health system innovation in Canada?
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.