Championing a charter to facilitate health data sharing

A group of experts charged with providing strategic direction and a roadmap for maximizing the impact of health data is calling for the establishment of a Canadian Health Data Charter.

The Charter would consist of a common set of principles that put people and populations at the centre of the decision-making process governing the design and use of health data.

“I am a real fan of the idea of a Canadian Health Data Charter and thinking about ways to promote that across the [health] system as a means of arriving at a shared purpose,” said Rob Annan, CEO of Genome Canada, at the 21st Annual Research Money Conference, where he was one of three panellists discussing obstacles to sharing health data.

“I think the establishment of that Charter is the kind of recommendation that's easy to gloss over … but it is really important because to build a system that's going to benefit us for the long term, you have to really build it from the foundation up and the foundation gets built kind of brick by brick,” he said.

The Charter is one of 10 recommendations released this month in the third and final report of the 19-member Pan-Canadian Health Data Expert Advisory Group (EAG).

The EAG was established in 2020 by the federal government to provide advice on the development of a Pan-Canadian Health Data Strategy that would address urgent and immediate health data challenges presented by the Covid-19 pandemic, and improve Canada’s ability to collect, share, and use health data for health system, public health and policy decision-making.

Vivek Goel, President and Vice-Chancellor of the University of Waterloo, was tapped by the federal government to serve as EAG Chair and its so-called Health Data Champion.

“There is no 'smoking gun' — the challenges to implementation are the result of a complex set of interactions between multiple levels of government, health professionals and organizations, and the public and private sector with the common goal of access to data while preserving privacy and confidentiality. Accordingly, there are no simple solutions or easy fixes,” Goel writes in the EAG’s first report, which maps out a vision for the Canadian health data ecosystem.

Read: Incoherent approach to managing health data in Canada urgently needs fixing

By Ewan Affleck and Vivek Goel

The EAG states that the fundamental challenge is not one of technology but rather of culture, and calls for “a new approach with a common vision and stronger governance and a more collaborative culture are needed to maximize the value of health data assets for Canadians.”

At the Research Money conference, that point was underscored by EAG member Kimberlyn McGrail, a Professor in the UBC School of Population and Public Health and Scientific Director of Population Data BC and Health Data Research Network Canada.

“There are a few different dimensions of culture change," she said. "First, we need to make sure we all have the same ideas about why we are doing what we’re doing. That’s where the Canadian Health Data Charter comes in. There is also who is doing it. It’s not just the federal government or even the public sector. When it comes to health data, the who is multi, multi stakeholder. And finally, there is the how we do it.”

A person-centric, learning health system

The report highlights the need for a standardized, person-centred, interoperable, and secure Canadian health data system. It also maps out immediate actions that could be undertaken to strengthen the system “with collaboration, adequate funding, and political support,” including the endorsement of the vision and Canadian Health Data Charter by jurisdictions across Canada.

The report marks the culmination of 16 months of research, review and consultation. It builds on two previous reports that examined the root causes of Canada’s fragmented health data system, established a national vision for a person-centric “learning health system,” and laid out recommendations for strengthening the health data foundation.

The EAG defines a learning health system as one in which “connected data support insights that drive evidence-informed decisions.” It envisions extensive and ongoing public engagement to inform the implementation of health data strategies, including the establishment of a public assembly. The assembly would advise government on what constitutes responsible collection, access, sharing, and use of health data in Canada. 

In addition to the Canadian Health Data Charter, specific recommendations include respect and support for First Nations, Inuit, and Métis Nation data principles and strategies, and the establishment of health data stewardship and policy frameworks.

The EAG envisions a role for data stewards as champions of access to health data and calls on jurisdictions to have a “Chief Health Data Steward”, who would optimize health data activities within their jurisdiction. The goal of the policy framework would be to minimize unnecessary friction in data access and sharing within and across jurisdictions. [See Table below for a summary of the recommendations.]

“What really stood out for me is the recommendation around a common policy framework for data sharing and implementing interoperable data standards,” said panellist Roxana Sultan, Vice President, Health at the Vector Institute for Artificial Intelligence.

“Even if we surmount the challenges of making health data available for research, one of the biggest limitations is the amount of time and investment and effort that it takes to make these data usable, especially for things like AI and machine learning…," she said. "If we can have an interoperable data standard and a common framework for data sharing, it would be a significant step in achieving usability and reducing the burden on health data custodians and researchers to try to generate value from the data for health service and system improvement.”

Read: Where the blood hits the bench — the challenges of sharing health research material

By Monte Steward

Table: Summary of Recommendations from Expert Advisory Group Report 3: Toward a world-class health data system

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