November 1, 2018 (Vancouver, BC) – Arthritis Research Canada scientists and patient research partners have created a practical measurement tool to determine the quality of patient engagement in the research process.
The 37-item questionnaire, called the Patient Engagement In Research Scale (PEIRS), is the result of a study published in the scientific journal PLOS One. It was developed in collaboration with patient participants with a variety of diseases and health conditions.
This work is important because studies over the last two decades have provided recommendations and principles for engaging patients in research. Funding agencies and reputable scientific journals also require patient engagement in research projects. But there is limited evidence regarding the effectiveness of current methods.
“PEIRS is the first tool of its kind to evaluate patient engagement in a comprehensive way,” said Dr. Clayon Hamilton, a post-doctoral fellow at Arthritis Research Canada and the University of British Columbia, and the study’s lead researcher. “This work is crucial because we need valid and reliable ways to measure the effectiveness of patient engagement initiatives in all areas of research.”
Patient engagement refers to patients and family caregivers taking a hands-on role in decision-making related to designing and undertaking a study – instead of being study ’subjects’ as was common in the past.
“Patients see a disease from a different perspective than researchers,” said Kelly English, the co-chair of Arthritis Research Canada’s Patient Advisory Board and a participant in the study. “We have lived it firsthand, so we can offer unique perspectives that enrich the quality, relevance and impact of research and, ultimately, change how healthcare is delivered.”
Despite the fact that researchers are involving patients in their work, reviews have identified challenges such as tokenism – involving patients simply for the sake of involving them.
“The evaluation of patients’ perspectives on their engagement is an important vehicle that can be used to move the quality of engagement from tokenistic to meaningful,” Hamilton said. Our work is the first step toward quantifying how ‘good partnership’ should look when patients are engaged in the research process.”
The PEIR framework includes the following eight components: procedural requirements, convenience, contributions, support, team interaction, research environment, feel valued and benefits.
Please click here to read the study.
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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. 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.
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