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Studying How Patient Engagement Influences Research: A Mixed Methods Study.
Deborah A Marshall1,2, Nitya Suryaprakash3, Danielle C Lavallee4
1Department of Community Health Sciences, Cumming School of Medicine, University of Calgary, 3280 Hospital Drive NW, Health Research Innovation Centre (HRIC) Building, Room 3C58, Calgary, AB, T2N 4Z6, Canada. damarsha@ucalgary.ca.
The Patient
|March 15, 2024
Summary
Patient engagement (PE) in research significantly influences all study stages, from design to knowledge translation. This collaborative approach ensures research is patient-centered, rigorous, and impactful.
Area of Science:
- Health Services Research
- Qualitative Research Methods
- Patient-Centered Outcomes
Background:
- Growing evidence supports patient engagement (PE) in research.
- Limited research exists on PE's influence across the entire research process and its outcomes.
Purpose of the Study:
- To investigate the influence and outcomes of patient engagement throughout the research lifecycle.
- To add evidence on the impact of patient research partners (PRPs) in study design and execution.
Main Methods:
- Convergent mixed-method design integrating survey and observation data.
- Two groups (PRP-led and researcher-led) designed and conducted an inflammatory bowel disease (IBD)-related patient preference study.
- Validated evaluation tools and observations assessed PE at multiple study points.
Main Results:
- Patient research partners (PRPs) actively contributed to all research stages: launch, design, implementation, and knowledge translation.
- PRPs enhanced clarity on study design, population, data collection, and results interpretation.
- Collaborative partnerships yielded patient-centered, rigorous, feasible, and sustainable research projects.
Conclusions:
- Meaningful patient and researcher collaboration influences all qualitative research phases, including design, approach, and outputs.
- Integrated patient engagement leads to more relevant, understandable, and impactful research outcomes.
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