Building the health data system Canada needs (#VCAHSPR22 #Ehealth2022)

From: Expert Advisory Group Report 3: Toward a world-class health data system

Canada may be in desperate need of a world-class, person-centric health data system but the drive to implement such a system certainly isn’t making headlines … even though patients are being harmed and sometimes dying without one.

A month ago, the Pan-Canadian Expert Advisory Group (EAG) released its third and final report on developing such a system, to what can only be described as a total lack of media attention. The EAG was established in the fall of 2020 under the chairmanship of Dr. Vivek Goel with support from the Public Health Agency of Canada.

While Canadians may badly need and strongly support the set of common principles outlined in a Canadian Health Data Charter – endorsement of which was the first recommendation of the advisory group – it’s hardly a topic to knock Ukraine or even  the Ontario election of the front pages of newspapers.

However this week the EAG did have an opportunity to give a comprehensive account of its work and the issues involved at the annual meeting of the Canadian Association of Health Services and Policy Research (#CAHSPR22).

Serendipitously, the e-health 2022 Virtual Conference & Tradeshow (#ehealth2022), occurring at the same time, featured a panel discussion in which representatives from Canada’s main players in the digital health space – Canada Health Infoway, the Canadian Institutes for Health Information (CIHI) and Digital Health Canada – discussed how they were collaborating to address interoperability of health systems. As those working in digital health have know for years, interoperability is one of the key facilitators needed to overcome some of the barriers spelled out by the EAG in its reports.

As part of the EAG presentation, Eric Sutherland noted that the currently health data in Canada is “as protected as possible and as open as necessary” and a radical culture shift is required to flip this paradigm. Dr. Ewan Affleck, another member of group, made a strong case for core principles in a Data Charter to make this happen. “We have a moral obligation to do this because we are failing Canadians if we do not,” said Dr. Affleck.

While there is not space here to outline all that the EAG proposes for such a charter, the highlights include the need for:

  • Person-centric health information design to ensure that health data follow the individual across points of care to support individual, clinical, and analytical access and use.
  • The quality, security and privacy of health data to maximize benefit and reduce harm to individuals and populations.
  • Literacy regarding health data and digital methods for the public, decision-makers and the health workforce.
  • Harmonization of health data governance, oversight, and policy.
  • Support for First Nations, Inuit and Metis Nation data sovereignty.

As for implementing the strategy, the EAG calls for endorsement of the principles in the charter as a first step with other incremental advances being made towards implementation of the full strategy in a decade. The EAG also acknowledges the importance of collaboration among key players, including levels of government and the public, to bring about the strategy.

The full text of the EAG’s third report can be accessed here.

For their part the e-Health panel noted that the availability of health data in a common, standardized and structred format is the key to interoperability. Abhi Kalra, VP, Portfolio Management, Virtual Care Programs, Canada Health Infoway acknowledged, the journey to interoperability has taken some time but key organizations are now leveraging their assets and working collaboratively to bring it closer to reality.