Ontario is at a turning point in digital health, with the federal government introducing Bill S-5, the Connected Care for Canadians Act, and the province proposing a unified primary care electronic medical record system.
These initiatives offer many opportunities for improving health. At the same time, there are many potential risks for privacy and accountability.
Building in community governance and oversight would help build public trust and ensure their interests are properly protected.
The current state
Communities and health-system leaders alike have long expressed frustration with Ontario’s fragmented health information landscape, given that even in 2024, 44 per cent of reported privacy breaches were caused by misdirected faxes.
A modern, integrated digital system is overdue, and recent federal and provincial initiatives may signal meaningful change. Yet these efforts must contend with declining public confidence, as only about half of Canadians believe their health information is handled with the level of privacy they expect.
Many communities, including Black communities, continue to raise concerns about surveillance and the risk of discrimination when large-scale datasets are developed and used. With explicit references to artificial intelligence (AI) in the federal bill and Ontario’s expanding use of AI in health services, the prospect of highly integrated datasets brings both promise and apprehension for equity-deserving populations.
The promise of change
While a centralized dataset could make it easier for research and system change, it could also create an opportunity to strengthen community-driven data governance.
In 2022, the Ontario Health Data Council emphasized the need for a system-level approach to data governance and stewardship in order to address the inequities created by today’s fragmented ecosystem. An important part of this vision was the use of models like the Engagement, Governance, Access and Protections (EGAP) framework to empower communities to lead decisions about their own data. A single provincial electronic medical record system could help bring this work to life and ensure communities truly benefit from a more connected health system.
A commitment to community
Similar work is already underway across Canada. Wellesley Institute has published two reports highlighting efforts by major hospital networks, community health centres, Ontario Health Teams, public health units, and ICES to build stronger community‑led data governance models. Institutions nationwide, including federal bodies, have also endorsed a consensus statement affirming the importance of community data governance.
The interest and expertise clearly exist. What is needed now is a firm commitment to making community data governance an explicit pillar of Canada’s emerging health data landscape.
Looking ahead
Ontario, and Canada more broadly, has an opportunity to lead in the next era of health data, but that progress must not come at the expense of communities already facing harm.
A more centralized digital health system will only advance equity if equity‑deserving populations are meaningfully involved in its governance from the outset. With so much groundwork already underway, a unified data ecosystem could elevate community‑driven governance to a new level.
As details about these initiatives continue to emerge, it will be important to watch closely for whether community governance is explicitly embedded in the plan.