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“Nothing about us, without us”: Measuring meaningful patient engagement in research

What you need to know

Many research organizations promote the active engagement of patients, families and caregivers in all stages of research, beyond being a study participant. A 2018 study gathered patient perspectives to create a questionnaire to measure the quality of patient engagement in research. This new tool can be used to improve how the lived experience of people with arthritis and other diseases is integrated into research initiatives to drive real-word impact.

What is this research about?

Engaging patients, families, caregivers, and other consumers as partners in research on chronic diseases like arthritis can provide essential insights from the end users of this research – people living with the real-life impacts of the disease every day. People with this lived experience can act as advisors, decision-makers, or other types of collaborators to improve the quality of research, following the principle of “nothing about us, without us”. While the importance of patient engagement in research is increasingly recognized, there hasn’t been a reliable way to measure whether it has been successful from the patient’s perspective.

What did the researchers do?

Dr. Linda Li assembled a team of researchers, students, and patient partners – seven people with arthritis and experience engaging in research. They led an initiative to study patients’ experiences as research partners. Then, they used the results to develop a questionnaire to assess the effectiveness of patient engagement in research. The team used a rigorous consensus-building approach, gathering input from 12 patients with different diseases and backgrounds.

What did they find? 

The resulting questionnaire contains 37 questions on areas like the team environment and interactions, feeling valued, support, benefits, and other aspects of meaningful patient engagement.

How can this research be used? 

This questionnaire provides a new tool to the research community to assess whether they are truly integrating patients and other partners into their research in a meaningful way. It can be used with either individuals or groups of patients to evaluate whether patient engagement initiatives like training workshops are effective, to improve the overall quality of patient engagement in research over time. This questionnaire can be accessed for free.

What impact could this have?

Patients bring a unique and important perspective to research. They can help ensure that research strategies are informed by what matters most to patients, interpret findings in the context of their real-world lived experience, and share research outcomes with the patient community in a relatable way.

Using a questionnaire to measure the effectiveness of patient engagement can establish a benchmark of success and encourage continued improvement in how researchers partner with patients to have the most impact on the lives of those living with diseases like arthritis.

About the researcher

Dr. Linda Li, who trained as a physiotherapist, is a professor at the University of British Columbia and a senior research scientist at Arthritis Research Canada. She holds a Canada Research Chair in Patient-oriented Knowledge Translation. Her research program has been supported in part through the Harold Robinson / Arthritis Society Chair in Arthritic Diseases at the Department of Physical Therapy, University of British Columbia. We are proud to have supported Dr. Li throughout her career, from her early engagement with the Arthritis Society as a physiotherapist, through to when she established and grew her independent research program with several projects supported by Arthritis Society grants.

Researcher Reflection

Photography of Sowmya Viswanathan

When I was a trainee, I benefited from the wisdom of patient partners in my research. This experience also shaped my interest in the field of knowledge translation. Today with a new generation of patient partners, my trainees are learning firsthand about meaningfully engaging patients in research. The contributions of patients in arthritis research cannot be overstated.

–   Dr. Linda Li, University of British Columbia and Arthritis Research Canada

Real-world Reaction

This study has exemplified how patients can be respectfully and meaningfully engaged in research. We helped define the questions, design the study, interpret the results, and share the findings. We are thrilled to see the projects evolve from ideas to reality and how our patient colleagues and researchers have valued the outcomes.

–   Alison Hoens, Arthritis Research Canada, Patient Advisory Board Member

Being involved with a research project from the exploratory phase to publication of the findings gave me a feeling of ownership. It was also a great way to learn more about issues that can arise when patients and researchers work together.

–   Annette McKinnon, Arthritis Research Canada, Patient Advisory Board Member

“Nothing about us, without us”: Measuring meaningful patient engagement in research

Publication citation

Hamilton CB, Hoens AM, McQuitty S, McKinnon AM, English K, Backman CL, Azimi T, Khodarahmi N, Li LC. Development and pre-testing of the Patient Engagement In Research Scale (PEIRS) to assess the quality of engagement from a patient perspective. PLoS One. 2018;13(11):e0206588.