Public Trust, Literacy & Health Data Foundations in Canada

It is critical for the public to have trust in governments and organizations that collect, protect, share and use health data. In this webinar, Julia Burt and Dr. Kim McGrail will provide an overview of a foundational paper developed by HDRN Canada, in collaboration with the Public Health Agency of Canada, on public trust and data literacy. This paper starts with principles outlined in the Pan-Canadian Health Data Charter, which puts people and populations at the centre of health data management. It then highlights the risks and benefits of data sharing and identifies other principles, all of which relate to public trust.

During the session, Julia and Dr. McGrail will highlight the engagement processes and methods used to develop the paper, and present its key findings, including the paper’s six recommendations for trustworthy data practices. These recommendations are intended to help different levels of government, health system organizations and others work together to earn trust in how health data are managed and used. They acknowledge that trust is earned based on what is done, how it is done, and how transparent and understandable government or organizational practices are.

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.

Dr. Kim McGrail is a Professor in the School of Population and Public Health and Centre for Health Services Policy Research at the University of British Columbia. She is the Scientific Director of Population Data BC. Dr. McGrail’s research interests are quantitative policy evaluation and all aspects of population data science. She the 2009 -2010 Commonwealth Fund Harkness Associate in Health Care Policy and Practice, the 2016 recipient of the Cortlandt JG Mackenzie Prize for Excellence in Teaching, and the 2017 recipient of UBC’s Excellence in Clinical or Applied Research Award. She was part of the Expert Advisory Group for the pan-Canadian Health Data Strategy and is currently a member of the Global Partnership for AI as part of the Data Governance Working Group.