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  • What We've Learned
Is ‘Big Data’ a big deal for healthcare in Canada?
Everyday-Living-4.0-1-1
Scientific Study Title:
Start Date:
  • 2016
End Date:
  • 2017
Research Category
Tags

What did we do?

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.

What did we find?

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.

The Research Team

Principal investigators

  • Linda Li, (https://arthritisresearch.ca/linda-li/) BSc(PT), MSc, PhD, FCAHS, Senior Scientist, Implementation Science, Arthritis Research Canada (University of British Columbia)
  • Cheryl L. Koehn, B.A. President, Arthritis Consumer Experts

Co-Investigators

  • Natalie McCormick , BSc, MSc, PhD, Postdoctoral Fellow, Arthritis Research Canada Trainee (Harvard)
  • Clayon B. Hamilton, Ph.D. Research Trainee, Arthritis Research Canada
  • Post-Doctoral Research Fellow, (University of British Columbia) and BC Ministry of Health
  • Kelly English Arthritis Patient Advisory Board, Arthritis Research Canada
  • Allan Stordy Canadian Skin
  • Patient Alliance

Research Staff

  • Lynn Nowoselski, M.P.H. Administrative Coordinator, Arthritis Research Canada

Who Funded This Research?

This study was part of PRECISION: Preventing Complications from Inflammatory Skin, Joint and Bowel Conditions (https://arthritisresearch.ca/precision/), funded by the Canadian Institutes of Health Research. Natalie McCormick and Clayon Hamilton were supported by training awards from Canadian Institutes of Health Research. Clayon Hamilton was also supported by a training award from the Michael Smith Foundation for Health Research. Linda Li was supported by the Canada Research Chair Program, the Harold Robinson/Arthritis Society Chair in Arthritic Diseases and the Michael Smith Foundation for Health Research.

How Can People Get Involved?

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.

Media and Infographics

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