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  • Research Completed
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
Tags
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Linda Li
Senior Scientist, Implementation Science, BSc(PT), MSc, PhD, FCAHS
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Alison Hoens
Knowledge Broker, MSc, BScPT

Why do this research?

Reason For 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.

Methodology

Execution of Research

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:

  1. 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).
  2. Created questionnaire items for the PEIRS through thematic analysis of interviews and literature review.
  3. Engaged in refinement and selection of items via e-Delphi surveys and cognitive interviewing.
  4. Conducted a prospective cross-sectional web-based and paper-based survey in Canada and the USA to evaluate the measurement properties of the PEIRS.

Findings & Next Steps

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.

Related Publications

  • Wang E, Otamendi T, Li LC, Hoens AM, Wilhelm L, Bubber V, PausJenssen E, McKinnon A, McQuitty S, English K, Silva AS, Leese J, Zarin W, Tricco A, Hamilton CB. Researcher-patient partnership generated actionable recommendations, using quantitative evaluation and deliberative dialogue, to improve meaningful engagement. Journal of Clinical Epidemiology. 2023; 159:49-57.
  • Hamilton CB,Hoens AM, McKinnon AM, McQuitty S, English K, Hawke LD, Li LC. Shortening and validation of the Patient Engagement In Research Scale (PEIRS) for measuring meaningful patient and family caregiver engagement. Health Expectations. 2021; 24: 863–79.
  • 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.
  • Hamilton CB,Hoens AM, Backman CL, McKinnon AM, McQuitty S, English K, Li LC. An empirically based conceptual framework for fostering meaningful patient engagement in research. Health Expectations. 2018;21(1):396-406.

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