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Canadians support using routinely-collected data for health research but are curious about the privacy measures

 

A sub study of PRECISION: Preventing Complications from Inflammatory Skin, Joint and Bowel Conditions

 

Principal investigators:

Linda C. Li, P.T., Ph.D.

Senior Research Scientist, Arthritis Research Canada

Professor, Department of Physical Therapy, The University of British Columbia

 

Cheryl L. Koehn, B.A.

President, Arthritis Consumer Experts

 

Study Start Date: April 2016

Study End Date: August 2017

 

What were the key findings?

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.

 

What was done?

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 was 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.

 

Co-Investigators

Natalie McCormick, Ph.D.
Research Trainee, Arthritis Research Canada
Post-Doctoral Research Fellow, Massachusetts General Hospital and Harvard Medical School

 

Clayon B. Hamilton, Ph.D.
Research Trainee, Arthritis Research Canada
Post-Doctoral Research Fellow, The 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, 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.

 

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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