New study takes steps towards standards for patient partners in research

Vancouver, BC (November 5, 2018) – Patient involvement in research – not as subjects but as partners – leads to findings that better address patient needs and concerns and improve healthcare and quality of life. But few studies have examined how to genuinely engage with patients in research.

For this reason, researchers and members of Arthritis Research Canada’s patient advisory board recently joined forces to examine how patients define meaningful engagement in health research.

The study specifically involved interviewing patients who had partnered in research at Arthritis Research Canada over the past decade.

In the study’s paper, published in BMJOpen (an open-access journal of the British Medical Journal group), patients describe how researchers can take steps to address the emotional and physical impact that engaging in research can have on them.

“We found patients valued researchers who actively supported them to minimize risks like feeling fatigued, stressed or guilty when juggling involvement in research with other priorities in daily life,” said Jenny Leese, a PhD candidate who co-led the study.

The study also revealed that patients want to interact socially with academics on their research teams.

“Getting to know one another beyond project-specific roles helps to tackle the hierarchy and insecurity that patients can sometimes feel when engaging with researchers,” said Sheila Kerr, a patient partner on the study. “Developing genuine relationships with scientists will ensure our voices are heard and have a meaningful impact on research results.”

This is such an important topic that the Canadian Institutes for Health Research (CIHR) created a Strategy for Patient-Oriented Research (SPOR) to engage patients in research – not as participants in clinical trials but as patient partners in research. SPOR has invested over $356,000,000 through CIHR grants and awards since 2010.

“This type of participation helps to ensure that the research being conducted is relevant and valuable to the patients that it affects,” according to the CIHR website.

At Arthritis Research Canada, patient engagement has been a vital part of the research process since 2001, when the Arthritis Patient Advisory Board was founded.

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Click here to read the full paper on the study.

ABOUT ARTHRITIS RESEARCH CANADA

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. With centres in British Columbia, Alberta and Quebec, Arthritis Research Canada is leading research aimed at arthritis prevention, early diagnosis and treatment, and quality of life issues.

Arthritis Research Canada’s Arthritis Patient Advisory Board is a group of volunteers living with at least one form of arthritis, whose mandate is to engage with researchers at Arthritis Research Canada and serve as a bridge in disseminating research with the public.

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