Connecting the Dots
The Expert Panel on Health Data Sharing
Canada’s health systems generate and collect a wealth of data but efforts to effectively share those data across provincial, territorial, and regional borders have been largely unsuccessful. If the capacity to share data is scaled up and facilitated nationally, the potential benefits are substantial: it could improve the quality of healthcare, make healthcare delivery more efficient and cost effective, advance health research and innovation, and improve lives.
Although there are risks to enhanced health data sharing, including potential breaches of privacy and cybersecurity, increased stigmatization and bias, a widening of the digital divide, unintended secondary uses of health data, and additional burdens for health professionals, these can be mitigated through careful implementation. At the same time, in the absence of greater health data sharing, negative impacts will deepen, affecting health systems management, hindering public health monitoring and interventions, exacerbating existing health inequalities, and limiting opportunities for new research and innovation.
With appropriate insight and information, Canada can modernize its current approach to health data sharing while continuing to protect the privacy of personal health information for those living in Canada. Thoughtful implementation that builds trust and prioritizes transparency will be essential.
Connecting the Dots examines the opportunities for maximizing health data sharing in Canada. It focuses on both the benefits and risks associated with increasing that exchange, the legal and regulatory considerations related to health data governance, and the opportunities to implement solutions that facilitate health data sharing across organizations, provinces/territories, and the country while protecting patient privacy.
Public Health Agency of Canada
What are the opportunities for maximizing the benefits of health data sharing?
Health data sharing is not a new policy issue in Canada. For decades, health institutions have been collecting and storing personal health information, creating rich but fragmented repositories of data. Significant investments have been made with the ultimate objective of connecting these repositories and facilitating data exchange. Canada’s health information technology infrastructure is now well established. The challenge is that infrastructure is not effectively harnessed to generate the expected benefits at scale. Existing data sharing networks to enhance clinical care, health system improvement and innovation, public health, and research remain too scattered to constitute a comprehensive, pan-Canadian health data sharing system. However, the success of some of these initiatives may indicate that the social, political, and cultural conditions that inhibit health data sharing unnecessarily support systemic under-performance. These circumstances are increasingly intolerable in health systems approaching crisis levels with respect to accessibility, quality, and equity.