Studying How Patient Engagement Influences Research: A Mixed Methods Study

Deborah A. Marshall (), Nitya Suryaprakash, Danielle C. Lavallee, Tamara L. McCarron, Sandra Zelinsky, Karis L. Barker, Gail MacKean, Maria J. Santana, Paul Moayyedi and Stirling Bryan
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Deborah A. Marshall: University of Calgary
Nitya Suryaprakash: University of British Columbia
Danielle C. Lavallee: Michael Smith Health Research, British Columbia
Tamara L. McCarron: University of Calgary
Sandra Zelinsky: Alberta Strategy for Patient Oriented Research (SPOR) Support Unit
Karis L. Barker: University of Calgary
Gail MacKean: University of Calgary
Maria J. Santana: University of Calgary
Paul Moayyedi: IMAGINE SPOR Chronic Disease Network
Stirling Bryan: University of British Columbia

The Patient: Patient-Centered Outcomes Research, 2024, vol. 17, issue 4, No 4, 379-395

Abstract: Abstract Background There is evidence supporting the value of patient engagement (PE) in research to patients and researchers. However, there is little research evidence on the influence of PE throughout the entire research process as well as the outcomes of research engagement. The purpose of our study is to add to this evidence. Methods We used a convergent mixed method design to guide the integration of our survey data and observation data to assess the influence of PE in two groups, comprising patient research partners (PRPs), clinicians, and researchers. A PRP led one group (PLG) and an academic researcher led the other (RLG). Both groups were given the same research question and tasked to design and conduct an inflammatory bowel disease (IBD)-related patient preference study. We administered validated evaluation tools at three points and observed PE in the two groups conducting the IBD study. Results PRPs in both groups took on many operational roles and influenced all stages of the IBD-related qualitative study: launch, design, implementation, and knowledge translation. PRPs provided more clarity on the study design, target population, inclusion–exclusion criteria, data collection approach, and the results. PRPs helped operationalize the project question, develop study material and data collection instruments, collect data, and present the data in a relevant and understandable manner to the patient community. The synergy of collaborative partnership resulted in two projects that were patient-centered, meaningful, understandable, legitimate, rigorous, adaptable, feasible, ethical and transparent, timely, and sustainable. Conclusion Collaborative and meaningful engagement of patients and researchers can influence all stages of qualitative research including design and approach, and outputs.

Date: 2024
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DOI: 10.1007/s40271-024-00685-8

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