Measuring the impact of lived experience and caregiver engagement in research on the research conducted: a qualitative study, co-design process and pilot testing of an assessment tool
4 affiliations
- 1University of Toronto, Toronto, Ontario, Canada
- 2Centre for Addiction and Mental Health, Toronto, Ontario, Canada
- 3University of Ottawa, Ottawa, Ontario, Canada
- 4Foundry, Vancouver, Ontario, Canada
Abstract
Background: People with lived/living experience of health conditions, as well as caregivers, are increasingly engaged in research.
Objective: This study aimed to develop and pilot test a new tool measuring the impact of lived/living experience engagement on research. The measurement tool is called the Measure of Engagement Tool for Research and lived Experience (METRE).
Design: We conducted a qualitative descriptive study and mixed methods pilot test, with co-design.
Participants: We recruited 28 people with lived/living experience and caregivers and 12 academic researchers to understand the impacts of engagement on the research. Using the findings, we drafted the METRE. We pilot tested the METRE among 13 people with lived/living experience and caregivers and 10 academic researchers. Insights were used to refine the METRE.
Results: Qualitatively, participants identified multiple domains of impact of engagement on research, which guided tool development. Pilot testing of the draft METRE revealed that it was straightforward to complete, while providing a thorough evaluation of the impact that engagement has on research. However, some areas of improvement were recommended. The draft items showed acceptable preliminary performance.
Conclusions: An assessment tool is now available to assess the impact that lived/living experience engagement has on research. Additional research is required to evaluate its psychometric properties. Tools to evaluate the impact of engagement on research will help advance the science of engagement and support engaged research teams in their work.
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BibTeX
@article{hawke2026measuring,
title = {{Measuring the impact of lived experience and caregiver engagement in research on the research conducted: a qualitative study, co-design process and pilot testing of an assessment tool}},
author = {Lisa D Hawke and Jingyi Hou and Katie Upham and Mary Rose van Kesteren and Charlotte Munro and Shoshana Hauer and Claudia Sendanyoye and Tanya Halsall and Lena Quilty and Clayon Hamilton and Skye Pamela Barbic and Wei Wang},
journal = {BMJ Open},
year = {2026},
month = nov,
doi = {10.1136/bmjopen-2026-121256},
url = {https://bmjopen.bmj.com/lookup/doi/10.1136/bmjopen-2026-121256},
note = {CC BY-NC 4.0},
}
RIS
TY - JOUR
TI - Measuring the impact of lived experience and caregiver engagement in research on the research conducted: a qualitative study, co-design process and pilot testing of an assessment tool
AU - Lisa D Hawke
AU - Jingyi Hou
AU - Katie Upham
AU - Mary Rose van Kesteren
AU - Charlotte Munro
AU - Shoshana Hauer
AU - Claudia Sendanyoye
AU - Tanya Halsall
AU - Lena Quilty
AU - Clayon Hamilton
AU - Skye Pamela Barbic
AU - Wei Wang
PY - 2026
DA - 2026/11/04
JO - BMJ Open
DO - 10.1136/bmjopen-2026-121256
UR - https://bmjopen.bmj.com/lookup/doi/10.1136/bmjopen-2026-121256
AB - Background: People with lived/living experience of health conditions, as well as caregivers, are increasingly engaged in research. Objective: This study aimed to develop and pilot test a new tool measuring the impact of lived/living experience engagement on research. The measurement tool is called the Measure of Engagement Tool for Research and lived Experience (METRE). Design: We conducted a qualitative descriptive study and mixed methods pilot test, with co-design. Participants: We recruited 28 people with lived/living experience and caregivers and 12 academic researchers to understand the impacts of engagement on the research. Using the findings, we drafted the METRE. We pilot tested the METRE among 13 people with lived/living experience and caregivers and 10 academic researchers. Insights were used to refine the METRE. Results: Qualitatively, participants identified multiple domains of impact of engagement on research, which guided tool development. Pilot testing of the draft METRE revealed that it was straightforward to complete, while providing a thorough evaluation of the impact that engagement has on research. However, some areas of improvement were recommended. The draft items showed acceptable preliminary performance. Conclusions: An assessment tool is now available to assess the impact that lived/living experience engagement has on research. Additional research is required to evaluate its psychometric properties. Tools to evaluate the impact of engagement on research will help advance the science of engagement and support engaged research teams in their work.
SN - 2044-6055
SN - 2044-6055
ER -