How comfortable are people with their health data being used to improve care, support research, or study specific diseases? A new Maritime-wide project is looking into this question by hearing directly from the public.
Over the past month, MSSU teams in Nova Scotia and New Brunswick have been hosting a round of community conversations about health data. The sessions invite people to share their questions, concerns, and expectations around how their health information is used.
“Working on this study has reinforced the importance of taking the time to ask and to listen,” said Amy Grant, MSSU Director of Research. “People’s comfort with data use is shaped by their lived realities, and hearing these perspectives is helping us better understand what builds trust.”
The conversations focus on how health data is currently used in administrative health data centers in the Maritime provinces and explore what conditions help people feel confident that their information is being used responsibly.
This concept is sometimes called “health data social licence” — the idea that even when data use is legally permitted, it also needs to be publicly supported and trusted.
So far, five sessions have been completed in Nova Scotia and two in New Brunswick in rural and urban areas. Plans are underway for more opportunities to participate, including a session with newcomers at the YMCA in Saint John and upcoming virtual conversations for French-speaking residents.
For Brian Cho, a patient partner on the research team, being involved in the project highlights the importance of public voices:
“As a Patient/Public Partner on this research team, I’ve been lucky to be a part of the project from the beginning, providing input on some of the methodology and project design. The project leads have a genuine interest in using an inclusive study design process to help ensure a wide spectrum of public voices are heard from. This has been an exciting endeavor to be a part of and I look forward to seeing the end result.”
Cho was also instrumental in the Health Data Research Network Canada (HDRN Canada) Social Licence for Uses of Health Data: A Report on Public Perspectives project and co-authored the final report, bringing extensive knowledge to the MSSU research team.
Why this work matters
Every day, Canada’s publicly funded health system generates information about how people access and receive care. These large data sets help researchers study trends, understand health system performance, and support improvements in care.
But people may be unaware that these data exist or unsure how they are used. The project aims to understand what the public knows about health data, what they want to know about how health data is used to improve health care and services and will inform what organizations can do to build trustworthiness with the public.
What’s next
Feedback from the conversations will help the Maritime data centres strengthen how they communicate with the public about data use.
Visit our Project Page for updates as the project progresses.