Connecting the Dots

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.

Report findings

• When health systems are in crisis, the effective exchange of health data can improve the performance of those systems.
• By improving health data sharing, Canada can implement a learning health system.
• Smaller-scale health data-sharing initiatives have demonstrated benefits, but wide-ranging coordination will be needed to scale up such initiatives.
• The upfront financial costs of implementing data-sharing systems are likely to be offset by the resultant economic benefits, even in the medium term.
• Enhancing health data sharing in Canada would have a wide variety of benefits for patients, health practitioners, health research, and health systems.
• Potential risks and harms associated with health data sharing can be mitigated by careful implementation and building trust through public engagement.
• The risks of not enhancing health data sharing in Canada likely outweigh the risks of enhancing it.
• Several international jurisdictions have developed systems to share patient data across care settings, allow patients to access their health information, and provide health-related data for research, public health, health system management, and innovation.
• Successfully implementing a health data-sharing system relies on early and sustained public engagement, incremental approaches, and financial incentives or mandates to encourage participation.
• Shifting from a custodianship to stewardship model of health data governance may require legal reform, but there are opportunities to make this shift within the confines of existing regulatory regimes.
• Improving health data sharing might require reviewing existing privacy regimes in Canada.
• A pan-Canadian health data strategy will need to address fundamental issues of jurisdiction to ensure governments at all levels are aligned in their approaches to health data governance.
• To be successful, a collective, collaborative approach to health data governance is needed.