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  • What We've Learned
Assessing Meaningful Patient Engagement in Research
Everyday-Living-9.0-1
Scientific Study Title:
Patient Engagement in Research Scale (PEIRS) Study
Start Date:
  • 2016
End Date:
  • 2022
Research Category
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Why did we do this research?

Our goal was to address the lack of a valid measurement tool to assess meaningful patient engagement in health research projects. Patient engagement in research is crucial for ensuring research is relevant and fits the needs and experiences of patients and their families. Given this lack of a valid tool, we aimed to design and test a measurement tool, the Patient Engagement in Research Scale (PEIRS), to assess meaningful patient engagement.

What did we do?

We conducted a series of qualitative and quantitative studies involving patients as participants and as research team members. These studies involved thematic analysis of interviews, development of the PEIRS questionnaire, refinement through e-Delphi surveys and cognitive interviewing, psychometric analyses, and workshops with patient partners and researchers. Highlights of what we did include:

  • Conducted in-depth interviews with 18 patient research partners to identify themes and develop a conceptual framework for meaningful patient engagement in research (PEIR Framework).
  • Created questionnaire items for the PEIRS through thematic analysis of interviews and literature review.
  • Engaged in refinement and selection of items via e-Delphi surveys and cognitive interviewing.
  • Conducted a prospective cross-sectional web-based and paper-based survey in Canada and the USA to evaluate the measurement properties of the PEIRS.

What did we find?

Through our research, we developed the PEIRS, initially including 37 items, which were later shortened to 22 items (PEIRS-22) based on analyses. PEIRS-22 demonstrated validity and reliability in assessing the degree of meaningful patient engagement in research. Analysis of PEIRS-22 data led to the identification of areas for improvement in meaningful patient engagement, resulting in 14 key recommendations across various categories to enhance patient engagement in research initiatives like the SPOR Evidence Alliance. The broader implication of this study is a demonstration of how to use PEIRS-22 and interpret its scores in a practical way for the improvement of patient engagement in a group/organization.

The Research Team

Principal Investigator

  • Clayon Hamilton, PhD, Former Arthritis Research Canada Trainee

Co-Investigators

  • Dr. Linda Li, (https://arthritisresearch.ca/linda-li/) BSc(PT), MSc, PhD, FCAHS, Senior Scientist, Arthritis Research Canada; (University of British Columbia)
  • Alison Hoens, MSc, BScPT , Knowledge Broker, Arthritis Research Canada (University of British Columbia)

Research Assistant

  • Tara Azimi

Who Funded This Research?

Dr. Clayon Hamilton received funding from a post-doctoral trainee award from the Michael Smith Foundation for Health Research, a CIHR Doctoral Award, an Arthritis Health Professions Association study grant, and the SPOR Evidence Alliance.

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