Researchers Plant Seed for Stronger Patient Partnerships

June 26, 2025 (Vancouver) – Arthritis Research Canada researchers are shedding light on the importance of patient and public engagement in research and highlighting tools to help fellow scientists build meaningful, genuine partnerships in a new research note.

The practice of including people with lived experiences – such as patients or caregivers – in research has increased over the last two decades. However, so have concerns regarding the risks of tokenism, unconscious bias, and inadequate planning and time for deep engagement.

“We conduct research to find answers for people living with arthritis,” said Dr. Linda Li, a Senior Scientist at Arthritis Research Canada and lead author of the research note published in the Journal of Physiotherapy, a top-ranked physical therapy and rehabilitation journal. “If research teams fail to consider what is truly important to patients, then research outcomes might miss the mark for the very people they were intended to help.”

In Canadian settings, patient involvement in research refers to conducting research ‘with’ or ‘by’ people with lived experience as active partners rather than participants. It is a key part of research practices, and promotes greater understanding, acceptance and use of research findings. It also builds overall trust in research.

“Research teams need to regularly reflect on their practices and carefully consider who is being invited to participate and how they are supported to join,” Li said. “Research has traditionally been structured in ways that exclude some people, which leads to power imbalances.”

To help researchers engage patients meaningfully, Li’s team summarized two widely known frameworks: The International Association for Public Participation Spectrum (IAP2) of Public Participation and the Patient Engagement in Research (PEIR) Framework.

The IAP2 was developed to guide teams in designing strategies, resources and policies that foster collaborative environments. PEIR was created to bring a patient-centred perspective on meaningful engagement and was developed based on interviews with people living with arthritis about their research participation experiences. PEIR Scale (PEIRS) also comes with a measure for evaluating the quality of patient engagement.

“Merely having a ‘say’ doesn’t mean people are truly engaged or have real influence,” Li said. “We hope this research note inspires others to embrace patient and public participation in research and thoughtfully cultivate authentic partnerships with people who bring valuable lived experience to research.”

To read the full research paper, click here.

To learn about the PEIR framework, developed by Arthritis Research Canada’s scientists, click here.

To get involved in arthritis research, click here.

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Arthritis Research Canada is the largest clinical arthritis research institution in North America. Our mission is to transform the lives of people impacted by arthritis through patient-centred research and engagement. Arthritis Research Canada’s scientific director, Dr. Diane Lacaille, leads a team of over 100 researchers, trainees and staff whose life-changing research is creating a future where people with arthritis have the knowledge and tools to triumph over pain and disability. Arthritis Research Canada is now conducting arthritis research from coast to coast with centres in British Columbia, Alberta, Quebec, and Nova Scotia and scientists affiliated with ten major Canadian universities: University of British Columbia, Simon Fraser University, University of Calgary, University of Alberta, Western University, Université Laval, McGill University, Université de Montréal, Université de Sherbrooke and Dalhousie University. Arthritis Research Canada is leading research aimed at preventing arthritis, facilitating early diagnosis, finding new and better treatments, and improving quality of life.

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

Heather Caulder
Senior Officer, Marketing and Communications
Arthritis Research Canada
604.207.4010
hcaulder@arthritisresearch.ca