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      Is it worth it? Patient and public views on the impact of their involvement in health research and its assessment: a UK‐based qualitative interview study

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          Abstract

          Background

          There are mounting calls for robust, critical evaluation of the impact of patient and public involvement ( PPI) in health research. However, questions remain about how to assess its impact, and whether it should be assessed at all. The debate has thus far been dominated by professionals.

          Objective

          To explore the views of PPI contributors involved in health research regarding the impact of PPI on research, whether and how it should be assessed.

          Design

          Qualitative interview study.

          Setting and participants

          Thirty‐eight PPI contributors involved in health research across the UK.

          Results

          Participants felt that PPI has a beneficial impact on health research. They described various impactful roles, which we conceptualize as the ‘expert in lived experience’, the ‘creative outsider’, the ‘free challenger’, the ‘bridger’, the ‘motivator’ and the ‘passive presence’. Participants generally supported assessing the impact of PPI, while acknowledging the challenges and concerns about the appropriateness and feasibility of measurement. They expressed a range of views about what impacts should be assessed, by whom and how. Individual feedback on impact was seen as an important driver of improved impact and motivation to stay involved.

          Conclusions

          While there appears to be widespread support for PPI impact assessment among PPI contributors, their views on what to assess and how are diverse. PPI contributors should be involved as equal partners in debates and decisions about these issues. Individual feedback on impact may increase PPI contributors’ potential impact and their motivation to stay involved.

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          Most cited references12

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          Evaluating patient and stakeholder engagement in research: moving from theory to practice.

          Laura C Esmail, Emily Moore, Alison Rein (2015)
          Despite the growing demand for research that engages stakeholders, there is limited evidence in the literature to demonstrate its value - or return on investment. This gap indicates a general lack of evaluation of engagement activities. To adequately inform engagement activities, we need to further investigate the dividends of engaged research, and how to evaluate these effects. This paper synthesizes the literature on hypothesized impacts of engagement, shares what has been evaluated and identifies steps needed to reduce the gap between engagement's promises and the underlying evidence supporting its practice. This assessment provides explicit guidance for better alignment of engagement's promised benefits with evaluation efforts and identifies specific areas for development of evaluative measures and better reporting processes.
          Article 0 comments Cited 219 times – based on 0 reviews     Review now
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            The GRIPP checklist: strengthening the quality of patient and public involvement reporting in research.

            Sophie Staniszewska, Jo Brett, Carole Mockford … (2011)
            The aim of this study was to develop the GRIPP (Guidance for Reporting Involvement of Patients and Public) checklist to enhance the quality of PPI reporting. Thematic analysis was used to synthesize key issues relating to patient and public involvement (PPI) identified in the PIRICOM and PAPIRIS systematic reviews. These issues informed the development of the GRIPP checklist. The key issues identified included limited conceptualization of PPI, poor quality of methods reporting, unclear content validity of studies, poor reporting of context and process, enormous variability in the way impact is reported, little formal evaluation of the quality of involvement, limited focus on negative impacts, and little robust measurement of impact. The GRIPP checklist addresses these key issues. The reporting of patient and public involvement in health research needs significant enhancement. The GRIPP checklist represents the first international attempt to enhance the quality of PPI reporting. Better reporting will strengthen the PPI evidence-base and so enable more effective evaluation of what PPI works, for whom, in what circumstances and why.
            Article 0 comments Cited 178 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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                Author and article information

                Contributors
                Joanna C. Crocker:
                ORCID: http://orcid.org/0000-0002-8223-0349
                Role: Research Fellow in Patient Involvement Impact Assessment, Junior Research Fellowjoanna.crocker@phc.ox.ac.uk
                Anne‐Marie Boylan: Role: Research Fellow
                Jennifer Bostock: Role: Lay Contributor
                Louise Locock: Role: Health Experiences Fellow, Associate Professor and Director of Applied Research
                Journal
                Journal ID (nlm-ta): Health Expect
                Journal ID (iso-abbrev): Health Expect
                Journal ID (doi): 10.1111/(ISSN)1369-7625
                Journal ID (publisher-id): HEX
                Title: Health Expectations : An International Journal of Public Participation in Health Care and Health Policy
                Publisher: John Wiley and Sons Inc. (Hoboken )
                ISSN (Print): 1369-6513
                ISSN (Electronic): 1369-7625
                Publication date (Electronic): 24 June 2016
                Publication date (Print): June 2017
                Volume: 20
                Issue: 3 ( doiID: 10.1111/hex.2017.20.issue-3 )
                Pages: 519-528
                Affiliations
                [ 1 ]NIHR Oxford Biomedical Research Centre OxfordUK
                [ 2 ] Health Experiences Institute Nuffield Department of Primary Care Health SciencesUniversity of Oxford OxfordUK
                [ 3 ] Health Experiences Research Group Nuffield Department of Primary Care Health SciencesUniversity of Oxford OxfordUK
                [ 4 ] NIHR Collaboration for Leadership in Applied Health Research and Care OxfordOxford Health NHS Foundation Trust OxfordUK
                [ 5 ]UK
                Author notes
                [*] [* ] Correspondence

                Joanna Crocker, PhD

                Nuffield Department of Primary Care Health Sciences

                University of Oxford

                Radcliffe Observatory Quarter

                Woodstock Road

                Oxford OX2 6GG

                UK

                E‐mail: joanna.crocker@ 123456phc.ox.ac.uk

                Author information
                http://orcid.org/0000-0002-8223-0349
                Article
                Publisher ID: HEX12479
                DOI: 10.1111/hex.12479
                PMC ID: 5433537
                PubMed ID: 27338242
                SO-VID: 3ad00990-fdaa-4fca-9068-281371b12bb3
                Copyright © © 2016 The Authors. Health Expectations Published by John Wiley & Sons Ltd.
                License:

                This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

                History
                Date accepted : 26 May 2016
                Page count
                Figures: 0, Tables: 2, Pages: 10, Words: 5926
                Funding
                Funded by: National Institute for Health Research (NIHR) Oxford Biomedical Research Centre
                Funded by: Oxford University Hospitals NHS Trust
                Funded by: University of Oxford
                Funded by: Applied Health Research and Care Oxford
                Categories
                Subject: Original Research Paper
                Subject: Original Research Papers
                Custom metadata
                source-schema-version-number 2.0
                component-id hex12479
                cover-date June 2017
                details-of-publishers-convertor Converter:WILEY_ML3GV2_TO_NLMPMC version:5.0.9 mode:remove_FC converted:16.05.2017

                ScienceOpen disciplines: Health & Social care
                Keywords: evaluation,impact,patient involvement,public involvement,user involvement
                Data availability:
                ScienceOpen disciplines: Health & Social care
                Keywords: evaluation, impact, patient involvement, public involvement, user involvement

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