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HISTORY
Why Was OurHealthData Built
Despite growing public interest in how health data is collected, shared, governed, and used, Canada has never had a mass national public movement focused on health data.
OurHealthData was created to change that.
In response to this need, the development of OurHealthData began in October 2025.
By bringing people together around a shared vision of transparent, inclusive, and people-centred health data governance, OurHealthData works to ensure that public voices help shape the future of health data in Canada.
Why This Movement Matters
Access to health data affects everyone, yet decisions about how health data is governed, shared, and used are often made without broad public participation. As health data plays an increasingly important role in healthcare, research, and public policy, it is essential that the people most affected by these decisions have opportunities to help shape them.
OurHealthData was created to bring people together around a simple but important idea: health data governance should reflect the voices, lived experiences, and priorities of the public. By fostering public engagement, dialogue, and collective action, we create opportunities for patients, caregivers, families, communities, healthcare providers, researchers, and advocates to participate in conversations about the future of health data in Canada.
Rather than speaking on behalf of communities, OurHealthData works to create spaces for communities to speak for themselves.
By mobilizing voices from across the country, OurHealthData will help ensure that decisions about health data are informed not only by institutions and experts, but also by the people and communities whose lives are directly affected by them.
