Canadians support access to health data for research but curious about privacy


An Arthritis Research Canada study has revealed Canadians back the use of de-identified routinely collected data for health research but want to learn more about how their information is protected.

Over 93 per cent of individuals who participated in the study felt positively about the use of collected data, but only 58 per cent were confident about access and privacy controls.

Prior to this research, little was known about Canadians’ knowledge of, or level of support for, use of administrative and other large, routinely collected data for health research.

“Every day, information is collected about how Canadians use publicly funded health care,” said Natalie McCormick, the lead researcher on the study and a trainee at Arthritis Research Canada and Harvard Medical School. “Studying this data helps patients because it can teach us about the quality of health care, improve government spending on health care and even show long-term effects of a given type of treatment.”

Health researchers currently have difficulty accessing health data in a timely manner, and experts suggest this is due to some institutions being overly cautious about interpreting privacy legislation and public attitudes.

This study reveals that providing information to the public on the use of large sets of health data may increase support for life-changing health research for all Canadians, including those living with arthritis. This education will become increasingly important as sources of publicly and patient-collected information grow to include electronic medical records, biospecimens/genomic data, wearable devices, mobile health apps and more.


To read the paper, please click here.



Arthritis Research Canada is the largest clinical arthritis research centre in North America. Our mission is to transform the lives of people living with arthritis through research and engagement. Led by world-renowned rheumatologist, Dr. John Esdaile, Arthritis Research Canada’s scientific team of over 100 are creating a future where people living with arthritis are empowered to triumph over pain and disability. Within British Columbia, Alberta and Quebec, Arthritis Research Canada is leading research aimed at arthritis prevention, early diagnosis and treatment, and quality of life issues.


For more information or to arrange an interview, please contact:  

Heather Caulder

Marketing and Communications Coordinator

Arthritis Research Canada

604-207-4010 or hcaulder@arthritisresearch.ca

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