SRFP099: The experience of patient-partners in research: a qualitative systematic review

Jonathan Lauzon-Schnittka; Sophie Audette-Chapdelaine, MA, BCL, LLB; Magaly Brodeur, MD, PhD

Abstract

CONTEXT. Patient engagement in research is the practice of involving patients as partners across the research cycle. This practice has quickly become an international standard, with funding bodies actively encouraging it. The increased incentive to engage patients can lead to tokenistic partnerships, it is therefore important to consider the experiences of patient-partners. OBJECTIVE. To synthesize the qualitative literature on the experience of patients as partners in research. DESIGN. Systematic review of the literature with thematic synthesis, guided by the framework developed by Thomas et al. (2008) DATASET. A search strategy was developed to encompass keywords relating to patient-partners in research, their experience, and the qualitative nature of the target studies. 10 databases were searched using the EBSCO-host engine, along with the Scopus engine to include EMBASE. POPULATION STUDIED. The search results were screened for the following inclusion criteria: articles written in English; articles reporting on the experience of patient-partners in research; qualitative studies or mixed-methods studies with a distinct qualitative section. ANALYSIS. Included articles were charted for general information. The CASP qualitative checklist was used for critical appraisal. The “results” section of each article was coded line by line. Codes were aggregated inductively to form descriptive themes and analytical themes. RESULTS. The initial search yielded 10,222 results. After the removal of duplicates, 5534 titles and abstracts were screened, 88 full-text reports were evaluated, and 41 studies were included. Articles reporting on these studies were published between 2005 and 2020. Seven themes emerged from the analysis, ranging from “motivations to engage in research” to “impacts on broader life”. Articles reported varying degrees of perceived impact on research and satisfaction concerning the level of engagement. The importance of power differentials and team dynamics were widely stated. CONCLUSIONS. Findings provide an in-depth view of the experiences of patient-partners in research. Most articles reported a generally positive experience, but challenges and pitfalls of patient engagement were identified. This will serve research teams by highlighting good practices and possible improvements.
Leave a Comment
Jack Westfall
jwestfall@aafp.org 11/21/2021

Awesome. Terrific poster and presentation. Thanks for your work.

Lauren Oshman
laoshman@med.umich.edu 11/22/2021

Thank you. This is really helpful in thinking about how to communicate the benefits of research engagement with patient partners.

Diane Harper
harperdi@med.umich.edu 11/22/2021

Present your results in Phoenix next year! Thank you for sharing your work with NAPCRG!

maret felzien
maret.felzien@outlook.com 11/23/2021

Nice journey through the literature. I was delighted to see a patient partner committee member listed as an author. Bring some of the patient partners to Phoenix next year to help tell the story!  

Arturo Martinez
arturo.martinez.guijosa@gmail.com 11/23/2021

very clear presentation and walk through of your poster. Happy to hear right of the get go the benefits of patient partners and hope this does help communicate the importance to others of patient partners.

William R. Phillips
wphllps@uw.edu 11/23/2021

Great poster, abstract and video on an important topic deep in the heart of NAPCRG. Exceptional work. I've reviewed hundreds of these posters and yours is among the very the best. Thanks for adding your great  your video. Do you plan – or has there been a recent - parallel review of the quantitative research on patient engagement? I'd be interested to hear more about the sources of the publications - journals, specialties, projects - and how that might be related to the findings of the individual studies. Hope you continue on this important line of inquiry. Thanks for sharing your work here at NAPCRG. - Bill Phillips

Andy Pasternak
avpiv711@sbcglobal.net 11/28/2021

I love the layout of your poster- very easy to understand.

Social Media

Address

NAPCRG
11400 Tomahawk Creek Parkway
Leawood, KS 66211
800.274.7928
Email: napcrgoffice@napcrg.org