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  • Research Completed
Is ‘Big Data’ a big deal for healthcare in Canada?
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Scientific Study Title:
Is ‘Big Data’ a big deal for healthcare in Canada?
Start Date:
  • April 2016
End Date:
  • August 2017
Research Category
Tags
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Linda Li
Senior Scientist, Implementation Science, BSc(PT), MSc, PhD, FCAHS
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Natalie McCormick
Affiliate Scientist, Clinical Epidemiology, MSc, PhD

Methodology

Execution of Research

Every day, information is collected about how Canadians use publicly funded health care. Studying this data helps patients by teaching us about the quality of care, government spending on health care and long-term treatment effects. However, Canadians’ views about using these data are not well known, which could limit ongoing research. We used an online survey to see how much Canadians’ know about this research, and their enthusiasm, concerns, and interest in learning more about it. Researchers and patients worked together to develop the survey, recruit participants, and interpret and share the results.

Who is involved?

Involvement

This study was a partnership between three patients living with joint and skin disease and three Arthritis Research Canada researchers. The patients are part of the PRECISION Consumer Core. 151 Canadian adults completed the survey, mainly from BC and Ontario.

Findings & Next Steps

Most people who did our online survey supported using large datasets from our public health care system for health research, if names and personal information were removed. They especially liked that researchers could study long-term outcomes in large numbers of people. Even still, they wanted to learn more about the data access and privacy controls. Interacting with the public may increase support for this type of research and make it easier for Canadian researchers to study these rich datasets.

Related Publications

McCormick N, Hamilton CB, Koehn CL, English K, Stordy A, Li LC. Canadians’ views on the use of routinely collected data in health research: a patient-oriented cross-sectional survey. CMAJ Open. 2019;7(2):E203–9. http://cmajopen.ca/content/7/2/E203.full

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