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Health and social data are essential infrastructure – and big science

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A longstanding issue with funding for scientific research in Canada has been selecting large scientific projects.

Telescopes and particle accelerators come to mind. They are expensive and require long-term funding. Unfortunately, health and social data have largely been left out of the picture for big science research funding in Canada.

The common phrase “data is the new oil” plus the explosion of artificial intelligence (AI) reinforce the importance of data as critical infrastructure.

This kind of infrastructure is just as important for economic growth as investments in ports and electricity generation.

Statistics Canada and the Canadian Institute for Health Information (CIHI) are major players in the collection and curation of health and social data in the country. And considerable amounts of Canadian Institutes of Health Research (CIHR) and Social Sciences and Humanities Research Council (SSHRC) monies fund academic research using their data.

However, the provinces also have major amounts of relevant data which they are generally holding back. Their failure to allow pan-Canadian analysis of their potentially powerful data is an inter-provincial barrier to trade far larger than bringing beer across provincial borders.

As a result, compared to the character, duration and scale of cosmology and particle physics funding, including data analytics, Canadian research funding in epidemiology, health services and social sciences supports little more than cottage industry efforts.

Canada is thinking too small. We must treat health and social data as essential infrastructure, with the analytics supported at sufficient scale.

Fortunately, there is a nascent opportunity for improvement.

The federal government convened a blue-ribbon panel in 2022 to review Canada’s research infrastructure, emphasizing the need for more effective coordination and forward-looking strategic thinking informed by better horizon scanning.  A core recommendation was the creation of a “capstone” organization on top of the existing granting councils.

The good news is that the key recommendations were generally supported in the 2024 federal budget, and in the 2025 Liberal campaign platform, though only in a single sentence. We are waiting to see the details.

For the world class health and social science data and associated analytical infrastructure Canada could have, we need a fundamental reform of research funding.

Consider the following “use cases,” where data and analysis would be a major benefit to Canadians – though none are even feasible at present:

Long COVID 

We could determine more effective health interventions by linking an individual’s data on infections and treatments with longer-term follow-ups, by using common concepts and definitions across databases and by employing population health data from provincial databases.

Surgical procedures

We could improve surgical outcomes and surgical best practices across the country by using Canada’s wealth of real-world data to evaluate why there are well known regional differences in outcomes from procedures like coronary bypasses and joint replacements. This would help put an end to Canada’s pervasive ‘postal code medicine’ problem, which means where you live too often determines how you are treated.

Finance and economics for health-related industries

We could develop an in-depth understanding of the key factors affecting a firm’s growth, decline, mergers and takeovers – key factors driving productivity.

Population aging

We could accurately project the fiscal implications for health care use and public pension costs for Canada’s aging population. And enhanced data would allow policymakers to develop system-wide policy options rather than the hit-and-miss incremental changes we’ve had that ignore complex intereactions across these programs.

Meeting the challenges raised by these use cases – and many others – would improve health care sector effectiveness and economic growth policies.

How do we get there?

First, the federal government should use its constitutional powers to break the inter-provincial logjam by making the billions in fiscal transfers to provinces conditional on improvements in data sharing.

Second, significant changes are needed to the mandate and structure of Canada’s research funding agencies to make quality pan-Canadian data collection and analysis possible. One option would be enlarging the scope of the proposed capstone organization by bringing in Statistics Canada, CIHI and a small group of leading university-based health and social science researchers to select and fund high quality data and analytical projects in the health and social science fields.

Substantial added funding would have to be (re)allocated.  Senior provincial officials could participate in an observer role.

For too long Canada has been a free rider on other countries’ health research when we have our own world-class cornucopia of data waiting to be tapped.

It is long past time for the federal government to use its constitutional muscle.

By Michael Wolfson

Michael Wolfson is a former assistant chief statistician at Statistics Canada and current member of the University of Ottawa’s Centre for Health Law, Policy and Ethics.

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