Everyone generates health data, but how often do members of the public have an opportunity to be part of conversations about how that information is used and under what conditions?
Last year, MSSU staff and members of the public who were part of the research team, headed out to communities across the Maritimes, with a particular focus on rural areas, to start conversations about the use of health data for research.
What staff heard will help Maritime health data centres better understand what the public expects when health data is used and strengthen how they communicate with communities about its use.
Before taking the conversation into communities, the project team invited people with lived and living experience (PWLLE) to review the information that would be shared with participants and provide input into aspects of how the conversations would take place.
For Brian Cho, a person with lived and living experience, partnering on this project was an opportunity to help bring the public perspective into a complex conversation about health data.
Cho said his own experience on the project left him feeling that his contributions were valued.
“Public engagement didn’t feel like a ‘checkbox’… contributions and opinions felt like they actually mattered.”
Brian Cho
Community conversations were held in Nova Scotia and New Brunswick. They were presented with different scenarios for how health data might be used and asked how strongly they supported each one. After discussing their perspectives with others, they were asked again.
What they found was support was strongest when people saw a clear public benefit, trusted who was using the data and felt their privacy was protected. Participants had concerns about commercial interests, data safety and whether benefits would be shared equitably. People’s views also sometimes shifted through discussion, highlighting the value of ongoing public conversations about health data.
The conversations will continue in 2026–27 with a French-language session before shifting the project’s focus toward sharing what was learned.
This area of research is sometimes referred to as social licence.
