Assessing Meaningful Patient Engagement in Research

 

Scientific Study Title:

Patient Engagement in Research Scale (PEIRS) Study

Study Start Date:

2016

Study End Date:

2022

 

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:

  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.

 

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.

 

Research Team

Principal Investigator

Clayon Hamilton, PhD, Former Arthritis Research Canada Trainee

Co-Investigators

Dr. 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 the 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.

 

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 CBResearcher-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.