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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
In 2013, the Canadian Institutes of Health Research (CIHR; the Sponsor) asked the Council of Canadian Academies (the Council) to respond to the following charge:
What is the current state of knowledge surrounding timely access to health and social data for health research and health system innovation in Canada?
The charge also included five sub-questions:
• What is known about how to address technological and methodological challenges (such as variable data quality and comparability) associated with linkage of health and social data from various sources and across jurisdictions?
• What is known about the benefits, risks and barriers to timely access to health and social data for health research and health system innovation in Canada?
• What are the ethical, legal, and social implications of timely access to such data?
• What are best practices for improving access to such data for researchers while ensuring appropriate privacy safeguards and also taking full advantage of the digital data revolution?
• What are best practices in Canada and internationally for governance frameworks that facilitate access to such data and maintain public trust in the research enterprise?