Archives du mot-clé health data

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.



Community Attitudes on Using Health Data in Research in Canada & Australia

Date and time: Tuesday, June 18 · 12 – 2pm EDT

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.