OUR APPROACH
OurHealthData‘s Three Streams of Work
Our approach puts people at the centre of health data governance. By building awareness, elevating public perspectives, and translating those perspectives into policy action, we work to ensure that health data systems reflect the values, priorities, and needs of people across Canada.
The three streams are interconnected and mutually reinforcing. Awareness and relationship-building create the foundation for meaningful public participation. Public perspectives are then gathered, stewarded, and mobilized to inform policy and governance. In turn, policy outcomes are shared back with communities, creating an ongoing cycle of engagement, learning, and accountability.
Together, these three streams create a pathway from engagement to impact, helping shape a more trusted, inclusive, and connected health data future.
(1) AWARENESS
This stream of work focuses on raising awareness and building durable relationships with individuals and organizations across Canada, with a deliberate focus on communities historically excluded from health data conversations. This is done by working together to ensure we:
- Reach Canadians in every province and territory, beyond major urban centres and across linguistic, rural, and remote contexts
- Engage First Nations, Inuit, and Métis partners on terms grounded in their own data principles and governance
- Centre voices that systems too often overlook, ensuring our work reflects the full diversity of who Canadian health data is about
(2) PUBLIC VOICE
This stream of work focuses on developing opportunities for people to easily share their lived experiences related to health data in a safe way that is respectful, transparent, and heath data remains protected. This is done by working together to ensure we:
- Create a story-sharing process grounded in culturally appropriate consent and trust, ensuring people have a clear understanding of how their stories will be collected, used, and shared, and the ability to revisit or withdraw their consent for future use
- House stories with care and intention, while also protecting privacy and upholding data sovereignty as we make them available
- Turn shared stories into actionable data that informs policy makers and researchers to develop laws/regulations that are relevant, timely, and protects the public
(3) POLICY IMPACT
This stream of work focuses on collecting and elevating public perspectives to support the co-design of health data policies and governance approaches that serve everyone in Canada. It also aims to foster meaningful public engagement with health data legislation, policies, and strategies as they are developed and implemented. This is done by working together to ensure we:
- Bring public voices to the forefront of efforts to improve health data access and address data blocking in Canada, including through initiatives such as Bill S-5.
- Support public understanding of VITAL and the Federal AI Strategy so people can assess how health data and AI policies reflect their values and provide meaningful feedback.
- Co-design with Canadians by centring voices that systems too often overlook, ensuring our work reflects the full diversity of the people represented in Canada’s health data.