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. 2020 Jun;23(3):523-539.
doi: 10.1111/hex.13040. Epub 2020 Mar 10.

Preparing for patient partnership: A scoping review of patient partner engagement and evaluation in research

Marissa Bird  1 , Carley Ouellette  1 , Carly Whitmore  1 , Lin Li  1 , Kalpana Nair  1 , Michael H McGillion  1   2 , Jennifer Yost  3 , Laura Banfield  4 , Elaine Campbell  5 , Sandra L Carroll  1   2
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Preparing for patient partnership: A scoping review of patient partner engagement and evaluation in research

Marissa Bird et al. Health Expect. 2020 Jun.

Abstract

Background: Realizing patient partnership in research requires a shift from patient participation in ancillary roles to engagement as contributing members of research teams. While engaging patient partners is often discussed, impact is rarely measured.

Objective: Our primary aim was to conduct a scoping review of the impact of patient partnership on research outcomes. The secondary aim was to describe barriers and facilitators to realizing effective partnerships.

Search strategy: A comprehensive bibliographic search was undertaken in EBSCO CINAHL, and Embase, MEDLINE and PsycINFO via Ovid. Reference lists of included articles were hand-searched.

Inclusion criteria: Included studies were: (a) related to health care; (b) involved patients or proxies in the research process; and (c) reported results related to impact/evaluation of patient partnership on research outcomes.

Data extraction and synthesis: Data were extracted from 14 studies meeting inclusion criteria using a narrative synthesis approach.

Main results: Patient partners were involved in a range of research activities. Results highlight critical barriers and facilitators for researchers seeking to undertake patient partnerships to be aware of, such as power imbalances between patient partners and researchers, as well as valuing of patient partner roles.

Discussion: Addressing power dynamics in patient partner-researcher relationships and mitigating risks to patient partners through inclusive recruitment and training strategies may contribute towards effective engagement. Further guidance is needed to address evaluation strategies for patient partnerships across the continuum of patient partner involvement in research.

Conclusions: Research teams can employ preparation strategies outlined in this review to support patient partnerships in their work.

Keywords: evaluation studies; patient engagement; patient oriented research; patient participation; patient partners; scoping review.

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Conflict of interest statement

The authors declare that there is no conflict of interest.

Figures

Figure 1
Figure 1
PRISMA flow diagram. From: Moher et al53
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References

    1. Concannon TW, Fuster M, Saunders T, et al. A systematic review of stakeholder engagement in comparative effectiveness and patient‐centered outcomes research. J Gen Intern Med. 2014;29(12):1692‐1701. - PMC - PubMed
    1. Brett J, Staniszewska S, Mockford C, et al. Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expect. 2014;17(5):637‐650. - PMC - PubMed
    1. Crocker JC, Ricci‐Cabello I, Parker A, et al. Impact of patient and public involvement on enrolment and retention in clinical trials: systematic review and meta‐analysis. BMJ. 2018;363:k4738. - PMC - PubMed
    1. Forsythe LP, Carman KL, Szydlowski V, et al. Patient engagement in research: early findings from the patient‐centered outcomes research institute. Health Aff. 2019;38(3):359‐367. - PubMed
    1. Patient‐Centered Outcomes Research Institute . Engagement rubric for applicants. https://www.pcori.org/sites/default/files/Engagement‐Rubric.pdf. Accessed December 2, 2019.

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