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      A review of reviews exploring patient and public involvement in population health research and development of tools containing best practice guidance

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          Abstract

          Introduction

          Patient and public involvement (PPI) is increasingly seen as something that is integral to research and of importance to research funders. There is general recognition that PPI is the right thing to do for both moral and practical reasons. The aim of this review of reviews is to examine how PPI can be done ‘properly’ by looking at the evidence that exists from published reviews and assessing it against the UK Standards for Public Involvement in Research, as well as examining the specific features of population health research that can make PPI more challenging.

          Methods

          A review of reviews and development of best practice guidance was carried out following the 5-stage Framework Synthesis method.

          Results

          In total 31 reviews were included. There is a lack of current research or clarity around Governance and Impact when findings are mapped against UK Standards for Public Involvement in Research. It was also clear that there is little knowledge around PPI with under-represented groups. There are gaps in knowledge about how to ensure key specific attributes of population health research are addressed for PPI team members – particularly around how to deal with complexity and the data-driven nature of the research. Four tools were produced for researchers and PPI members to further improve their PPI activity within population health research and health research more generally, including a framework of recommended actions to address PPI in population health research, and guidance on integrating PPI based on the UK Standards for Public Involvement in Research.

          Conclusions

          Facilitating PPI in population health research is challenging due to the nature of this type of research and there is far less evidence on how to do PPI well in this context. The tools can help researchers identify key aspects of PPI that can be integrated when designing PPI within projects. Findings also highlight specific areas where more research or discussion is needed.

          Supplementary Information

          The online version contains supplementary material available at 10.1186/s12889-023-15937-9.

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          Patient engagement in research: a systematic review

          Juan Pablo Domecq, Gabriela Prutsky, Tarig Elraiyah … (2014)
          Background A compelling ethical rationale supports patient engagement in healthcare research. It is also assumed that patient engagement will lead to research findings that are more pertinent to patients’ concerns and dilemmas. However; it is unclear how to best conduct this process. In this systematic review we aimed to answer 4 key questions: what are the best ways to identify patient representatives? How to engage them in designing and conducting research? What are the observed benefits of patient engagement? What are the harms and barriers of patient engagement? Methods We searched MEDLINE, EMBASE, PsycInfo, Cochrane, EBSCO, CINAHL, SCOPUS, Web of Science, Business Search Premier, Academic Search Premier and Google Scholar. Included studies were published in English, of any size or design that described engaging patients or their surrogates in research design. We conducted an environmental scan of the grey literature and consulted with experts and patients. Data were analyzed using a non-quantitative, meta-narrative approach. Results We included 142 studies that described a spectrum of engagement. In general, engagement was feasible in most settings and most commonly done in the beginning of research (agenda setting and protocol development) and less commonly during the execution and translation of research. We found no comparative analytic studies to recommend a particular method. Patient engagement increased study enrollment rates and aided researchers in securing funding, designing study protocols and choosing relevant outcomes. The most commonly cited challenges were related to logistics (extra time and funding needed for engagement) and to an overarching worry of a tokenistic engagement. Conclusions Patient engagement in healthcare research is likely feasible in many settings. However, this engagement comes at a cost and can become tokenistic. Research dedicated to identifying the best methods to achieve engagement is lacking and clearly needed.
          Article 0 comments Cited 417 times – based on 0 reviews     Review now
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            ‘Is it worth doing?’ Measuring the impact of patient and public involvement in research

            Kristina Staley (2015)
            Abstract Much of the current debate around the impact of patient/public involvement on research focuses on the lack of empirical data. While a number of systematic literature reviews have reported the various ways in which involvement makes a difference to research and the people involved, this evidence has been criticised as being weak and anecdotal. It is argued that robust evidence is still required. This review reflects on the use of quantitative approaches to evaluating impact. It concludes that the statistical evidence is weakened by not paying sufficient attention to the context in which involvement takes place and the way it is carried out. However, if scientific (systematic, quantitative, empirical) approaches are designed in a way to take these factors into account, they might not generate knowledge that is useful beyond the original context. Such approaches might not therefore enhance our understanding of when, why and how involvement makes a difference. In the context of individual research projects where researchers collaborate with patients/the public, researchers often acquire ‘new’ knowledge about life with a health condition. This new understanding can be described as experiential knowledge—‘knowledge in context’—that researchers gain through direct experience of working with patients/the public. On this basis, researchers’ accounts of their experience potentially provide a source of insight and learning to influence others, in the same way that the patient experience helps to shape research. These accounts could be improved by increasing the detail provided about context and mechanism. One of the most important contextual factors that influence the outcome of involvement is the researchers themselves and the skills, assumptions, values and priorities they start with. At the beginning of any research project, the researchers ‘don’t know what they don’t know’ until they involve patients/the public. This means that the impact of involvement within any particular project is somewhat unpredictable. The answer to the question ‘Is involvement worth doing?’ will always be ‘It depends’. Further exploration of the contextual and mechanistic factors which influence outcomes could give a stronger steer to researchers but may never accurately predict any specific impact. Plain English summary In recent years, there has been considerable interest in finding out what difference patient and public involvement makes to research projects. The evidence published so far has been criticised for being weak and anecdotal. Some people argue we need robust evidence of impact from scientific studies of involvement. In this review, I consider examples of where impact has been measured using statistical methods. I conclude that the statistical evidence is weak, if the studies do not consider the context in which involvement takes place and the way that it is done. Studies designed to take this into account give us more confidence that the involvement did make a difference to that particular project. They do not tell us whether the same impact will occur in the same way in other projects and therefore have limited value. Researchers gain an understanding of involvement through their direct experience of working with patients and the public. This is ‘knowledge in context’ or ‘insight’ gained in the same way that patients gain expertise through their direct experience of a health condition. This means that detailed accounts of involvement from researchers already provide valuable learning to others, in the same way that patients’ insights help shape research. However, the impact of involvement will always be somewhat unpredictable, because at the start of any project researchers ‘don’t know what they don’t know’—they do not know precisely what problems they might anticipate, until the patients/public tell them.
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              Engaging stakeholders in rehabilitation research: a scoping review of strategies used in partnerships and evaluation of impacts.

              Chantal Camden, Keiko Shikako-Thomas, Tram Nguyen … (2015)
              To describe how stakeholder engagement has been undertaken and evaluated in rehabilitation research.
              Article 0 comments Cited 88 times – based on 0 reviews     Review now
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                Author and article information

                Contributors
                Jane Noyes: Jane.Noyes@bangor.ac.uk
                Journal
                Journal ID (nlm-ta): BMC Public Health
                Journal ID (iso-abbrev): BMC Public Health
                Title: BMC Public Health
                Publisher: BioMed Central (London )
                ISSN (Electronic): 1471-2458
                Publication date (Electronic): 30 June 2023
                Publication date PMC-release: 30 June 2023
                Publication date Collection: 2023
                Volume: 23
                Electronic Location Identifier: 1271
                Affiliations
                GRID grid.7362.0, ISNI 0000000118820937, School of Medical and Health Sciences, , Bangor University, ; Bangor, UK
                Article
                Publisher ID: 15937
                DOI: 10.1186/s12889-023-15937-9
                PMC ID: 10311710
                PubMed ID: 37391764
                SO-VID: 0d6ecda3-9a17-42fb-89c2-228137e3fa56
                Copyright © © The Author(s) 2023
                License:

                Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

                History
                Date received : 20 December 2022
                Date accepted : 19 May 2023
                Funding
                Funded by: Health and Care Research Wales
                Categories
                Subject: Research
                Custom metadata
                issue-copyright-statement © BioMed Central Ltd., part of Springer Nature 2023

                ScienceOpen disciplines: Public health
                Keywords: public and patient involvement,involvement,ppi,population health research,review of reviews,guidance
                Data availability:
                ScienceOpen disciplines: Public health
                Keywords: public and patient involvement, involvement, ppi, population health research, review of reviews, guidance

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