The Healthy Data Collective Webinar 5 - Pan-Canadian Health Data Charter

A pan-Canadian health data charter is vital as a unifying framework to align efforts and drive collaborative progress in transforming our health data systems to better serve patients, and improve health outcomes for all those living in Canada.

In this fifth webinar, we had the pleasure of hosting members of the pan-Canadian Health Data Strategy Expert Advisory Group who provided input that led to an official pan-Canadian Health Data charter. Alies Maybee, co-founder of the Patient Advisory Network, Bartha Knoppers, a Canadian Law Professor, Dr. Ewan Affleck, a clinician and informatician and Co-Founder of the Alberta Virtual Care Coordinating Body, and Glynda Reese, Program Lead for Digital health with the British Columbia Institute of Technology provided their perspectives on what prompted the idea of a charter, and how they hope it would be used to foster change.

The pan-Canadian Health Data Charter marks a pivotal development to improve how health data is designed and used in Canada. At its core, the charter sets out 10 principles for ethical and effective governance of health data across Canada. Provinces and territories officially endorsed the pan-Canadian Health Data Charter when the signed their latest bi-lateral agreement with the Federal Government, which the exception of Quebec

In this webinar, our panelists walked through the 10 principles and shared their views of how those principles could be applied. We explored themes such as promoting person-centred care through robust data management practices, addressing challenges in harmonizing health data standards across diverse healthcare systems, and recognizing the role of privacy and ethics in handling sensitive health information. After reviewing what was intended by the 10 principles, panelists noted that the principles work together and are not meant to be applied independently.

Bartha Knoppers explained how charters are traditionally used in policy development to support advancements by painting an aspirational vision for what the health data system should strive to deliver. Ewan continued by demonstrating how the charters aligned with the Canadian Health Act, and argued that the current health data systems are not meeting those principles. Alies reinforced how the system is not currently person-centered, this first principle is really a key starting point.

The charter is meant to serve as a North Star and a guide to building the health systems. It helps to bring together players from across the country to make it happen. Panelists encouraged attendees and those watching the recording to create opportunities to engage in conversations to raise awareness for the need for system change and the role the charter could play in doing so.

During the Q&A period, there was an important conversation about privacy and how it should not trump the other forms of data related harm. It was offered that most Canadians would want their data to be shared if it improved their care and health, and if it supported broader improvements of the health system.

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