Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
Review
. 2023 Jun 15;9(1):43.
doi: 10.1186/s40900-023-00448-z.

Roles, outcomes, and enablers within research partnerships: A rapid review of the literature on patient and public involvement and engagement in health research

Anne Wettergren Karlsson  1 , Anne Kragh-Sørensen  1 , Kirsten Børgesen  1 , Karsten Erik Behrens  1 , Torben Andersen  1 , Maiken Langhoff Kidholm  1 , Mette Juel Rothmann  2   3   4 , Marjolijn Ketelaar  5   6 , Astrid Janssens  7   8   9
Affiliations
Review

Roles, outcomes, and enablers within research partnerships: A rapid review of the literature on patient and public involvement and engagement in health research

Anne Wettergren Karlsson et al. Res Involv Engagem. .

Abstract

Background: Recent studies mention a need to investigate partnership roles and dynamics within patient and public involvement and engagement (PPIE) in health research, and how impact and outcomes are achieved. Many labels exist to describe involvement processes, but it is unknown whether the label has implications on partnerships and outcomes. This rapid review investigates how roles between patients, relatives and researchers in a broad variety of PPIE activities in health research are described in peer reviewed papers and explores what enables these partnerships.

Methods: Rapid review of articles published between 2012 and February 2022 describing, evaluating, or reflecting on experiences of PPIE in health research. All research disciplines and research areas were eligible. Four databases (Medline, Embase, PsychInfo and CINAHL) were searched between November 2021 and February 2022. We followed PRISMA guidelines and extracted descriptive factors: year, origin, research area and discipline, study focus, framework used and co-authorship. On a selection of articles, we performed a narrative analysis of partnership roles using Smits et al.'s. Involvement Matrix. Lastly, we performed a meta synthesis of reported enablers and outcomes of the partnerships. Patients and Relatives (PRs) have been involved in the whole rapid review process and are co-authors of this article.

Results: Seventy articles from various research disciplines and areas were included. Forty articles were selected for a narrative analysis of the role description of PRs and researchers, and a meta synthesis of enablers and outcomes. Most articles described researchers as decision-makers throughout the research cycle. PRs most often were partners when they were included as co-authors; they were mostly partners in the design, analysis, write-up, and dissemination stages. Enablers of partnerships included: PR training, personality of PRs and communication skills, trust, remuneration and time.

Conclusions: Researchers' decision-making roles gives them control of where and when to include PRs in their projects. Co-authorship is a way of acknowledging patients' contributions which may lead to legitimation of their knowledge and the partnership. Authors describe common enablers, which can help future partnership formation.

Keywords: Co-authorship; Coproduction; Evaluation; Health research; Partnerships; Patient and public involvement; Rapid review.

Plain language summary

This article investigates how other articles describe the roles patients, relatives and researchers have in patient and public involvement activities in health research. It also investigates which factors are supportive of creating these research partnerships. We searched four health research databases and found 70 relevant articles which somehow evaluated patient involvement activities in research. From these 70 articles we chose 40 which we closely investigated for descriptions of roles in the partnerships between researchers and patients and relatives. For this, we used a tool called the Involvement Matrix which uses five different roles: Listener (who is given information), Co-thinker (who is asked to give opinion), Advisor (who gives (un)solicited advice), Partner (who works as an equal partner) and Decision-maker (Who takes initiative and (final) decisions). We found that it is often researchers who take on the role of Decision-maker and that involvement often happens on their terms. We noticed that patients and relatives most often had the role of partner, when they were listed as co-authors of the article. This shows co-authorship as an authorization of their work during patient and public involvement activities. We found that patient and relative training, patients’ and relatives’ personality and communication skills, trust, financial reimbursement, and time were mentioned most often as enablers of good research partnerships.

PubMed Disclaimer

Conflict of interest statement

The authors declare that they have no competing interest.

Figures

Fig. 1
Fig. 1
PRISMA Flowchart
Fig. 2
Fig. 2
Involvement Matrix (reprinted with permission)
Fig. 3
Fig. 3
Articles grouped per publication year
Fig. 4
Fig. 4
Visualization of roles within non-co-authored and PR co-authored articles using the Involvement Matrix. Research Q = Research Question, R = Researcher, PR = Patient & Relative
Fig. 5
Fig. 5
Overview of enablers and outcomes for PR partnerships in included articles (n = 40)
See this image and copyright information in PMC

Similar articles

See all similar articles

Cited by

See all "Cited by" articles

References

    1. Miah J, Parsons S, Starling B, Lovell K, Leroi I, Dawes P. Impact of involving people with dementia and their care partners in research: A qualitative study. BMJ Open. 2020;10(10):e039321. - PMC - PubMed
    1. Minogue V, Donskoy A-L. Developing a training package. Int J Health Care Qual Assur. 2017;30:458–466. - PubMed
    1. Marks S, Mathie E, Smiddy J, Jones J, Da Silva-Gane M. Reflections and experiences of a co-researcher involved in a renal research study. Res Involv Engagem. 2018;4(1):1–10. - PMC - PubMed
    1. Pomey M-P, Brouillard P, Ganache I, Lambert L, Boothroyd L, Collette C, et al. Co-construction of health technology assessment recommendations with patients: an example with cardiac defibrillator replacement. Health Expect. 2020;23(1):182–192. - PMC - PubMed
    1. Mockford C, Murray M, Seers K, Oyebode J, Grant R, Boex S, et al. A SHARED study-the benefits and costs of setting up a health research study involving lay co-researchers and how we overcame the challenges. Res Involv Engagem. 2016;2:1–12. - PMC - PubMed