Is this okay? Community attitudes on using health data in research in Canada and Australia: A cross-cultural exchange

The access and use of health data for research raises concerns related to privacy, commercial motives, equity and fairness for members of the public who want to know who is using data generated from their personal information and why. But despite concerns, there are clear benefits to using health data in research, including better patient care, better health system planning, and better understanding of disease and wellness.

In this two-hour, interactive workshop co-hosted by HDRN Canada and PHRN Australia, Julia Burt and Dr. Annette Braunack-Mayer will discuss how public engagement and dialogue can help us understand community attitudes about the use of health data in research. They will explore why members of the public support the use of health data in research and under what conditions, as well as reservations or concerns that arise. Julia and Annette will compare engagement methods from their respective research projects on community attitudes related to the use of health data in research, and share findings from Canada and Australia.

During the workshop, participants will be invited to share their thoughts on the use of health data for research through an interactive whiteboard and facilitated discussion. Participants will also be invited to view and contribute to comments from an identical workshop hosted in Australia on June 3.

Ideas generated will inform a joint paper by HDRN Canada and PHRN Australia.

ABOUT THE SPEAKERS

Julia Burt is HDRN Canada’s Public Engagement Operational Lead, working closely with the network’s Public Advisory Council to accelerate meaningful public engagement. She works with diverse members of the public on projects related to health data, including the co-creation of plain language about data, as well as exploring the public’s perception of acceptable uses and users of health data. Prior to her involvement with HDRN Canada, she was the Patient Engagement and Training and Capacity Lead with the Newfoundland and Labrador SPOR SUPPORT Unit (NL SUPPORT).

Dr. Annette Braunack-Mayer is the Head of the School of Health and Society at the University of Wollongong in Australia. She is a bioethicist, with research grounded in values-based social science. Her research combines theoretical analyses of health systems, policies and practices with the views and experiences of stakeholder groups, including community members, patients, clinicians and policy makers to develop real world solutions for policy makers. Dr. Braunack-Mayer has expertise in the use of deliberative methods to address contentious ethical and policy issues in health and social care. In recent years, her research has focused on social and ethical issues in big data and artificial intelligence, and on the delivery of culturally safe health and social services for older Aboriginal peoples. She also chairs two Human Research Ethics Committees and the Lumos Data Governance Committee, which supports a large program of work for the New South Wales government collecting and using general practice data.