October 19, 2023

Connecting the Dots

The Expert Panel on Health Data Sharing

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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.

The sponsor:

Public Health Agency of Canada

The question:

What are the opportunities for maximizing the benefits of health data sharing?

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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.


Expert Panel

The Expert Panel on Health Data Sharing