Canadian patients perspectives on data sharing survey - Looking for people living in Canada who have interacted with the healthcare system

Principal Investigators:

Jessica Edmonds, The University of Ottawa Heart Institute (UOHI), JEdmonds@ottawaheart.ca and Dr. Kelly Cobey, The University of Ottawa Heart Institute (UOHI), KCobey@ottawaheart.ca

Dr. Edmonds and Dr. Cobey are inviting you to take part in a Canada-wide survey about how health data should be shared for research. If you are 18 years or older and you or a loved one have interacted with the Canadian health care system, for example, by visiting a doctor, hospital, clinic, or participating in a health study, they would greatly value your perspective.

This is a bilingual online survey for Canada-based people who have interacted with the healthcare system to understand their opinions on sharing individual-level data collected during

a.) clinical care

b.) participation in research studies

What is this study about?

These researchers want to better understand how people living in Canada feel about sharing their coded health data from clinical care and from research. Your input will help guide policies that protect patient privacy while supporting meaningful health research that benefits Canadians.

What does participation involve?

• A short online survey (about 15 minutes) available in English and French
• You may skip any questions you prefer not to answer
• If you have previously taken part in health research studies, you will also be asked about your experience
• At the end, you can enter a draw to win one of three $100 gift cards

Your voice matters

Having specific data from Canada on patient preferences for how data is shared, what data is shared, and to whom, is critical to implementing data sharing policies and practices in a way that best serves the Canadian Community.

Your participation is voluntary and anonymous.

If you have any questions, please contact the Research Coordinator, Jessica Edmonds at JEdmonds@ottawaheart.ca

Thank you for considering adding your voice to this important national conversation. A reminder email will be sent if you are interested and have not completed the survey after 7 days.

This study is conducted by the University of Ottawa Heart Institute: OHSN-REB Protocol #20260006-01H. Version date: February 26, 2026.

For more Current Research Studies go to https://fibrocanada.ca/en/current-research-studies

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