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      Evaluation of public involvement in research: time for a major re-think?

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          Abstract

          The way that public involvement in research has been evaluated as a complex intervention has derailed the development of an evidence base. Two alternative approaches are available for constructing and evaluating patient involvement, each of which requires us to revisit the purposes and values that underpin it in each stage of the research process.

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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.
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            Consumer involvement in health research: a review and research agenda.

            Cindy Cooper, Jonathan Boote, Nic R Telford (2002)
            The involvement of consumers in health research is now Department of Health policy within the UK. Despite the existence of policy directives, there is a dearth of knowledge on the effects of such involvement. This paper critically reviews the state of our knowledge on this issue, and maps out a research agenda with the aim of stimulating systematic, empirical inquiry into consumer involvement in health research. The paper discusses definitions of 'the consumer'; considers why consumer involvement is believed to be important to health research; traces the development of the policy; analyses the epistemological and methodological implications of the policy; discusses the various levels of consumer involvement in research; and outlines the objections to the policy that have been put forward by clinicians and researchers. Four questions were identified during the review as being in need of theoretical and empirical attention: (1) how can consumer involvement in health research be further conceptualised? (2) how and why does consumer involvement influence health research? (3) how can the influence of consumers in health research be measured and evaluated? and (4) what factors are associated with 'successful' consumer involvement in health research?
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              Public involvement at the design stage of primary health research: a narrative review of case examples.

              Jonathan Boote, Wendy Baird, Claire Beecroft (2010)
              To review published examples of public involvement in research design, to synthesise the contributions made by members of the public, as well as the identified barriers, tensions and facilitating strategies. Systematic literature search and narrative review. Seven papers were identified covering the following topics: breast-feeding, antiretroviral and nutrition interventions; paediatric resuscitation; exercise and cognitive behavioural therapy; hormone replacement therapy and breast cancer; stroke; and parents' experiences of having a pre-term baby. Six papers reported public involvement in the development of a clinical trial, while one reported public involvement in the development of a mixed methods study. Group meetings were the most common method of public involvement. Contributions that members of the public made to research design were: review of consent procedures and patient information sheets; outcome suggestions; review of acceptability of data collection procedures; and recommendations on the timing of potential participants into the study and the timing of follow-up. Numerous barriers, tensions and facilitating strategies were identified. The issues raised here should assist researchers in developing research proposals with members of the public. Substantive and methodological directions for further research on the impact of public involvement in research design are set out. Copyright 2009 Elsevier Ireland Ltd. All rights reserved.
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                Author and article information

                Journal
                Journal ID (nlm-ta): J Health Serv Res Policy
                Journal ID (iso-abbrev): J Health Serv Res Policy
                Journal ID (publisher-id): HSR
                Journal ID (hwp): sphsr
                Title: Journal of Health Services Research & Policy
                Publisher: SAGE Publications (Sage UK: London, England )
                ISSN (Print): 1355-8196
                ISSN (Electronic): 1758-1060
                Publication date (Electronic): 27 October 2015
                Publication date (Print): July 2016
                Volume: 21
                Issue: 3
                Pages: 209-211
                Affiliations
                [1-1355819615612510]Senior Research Fellow, Centre for Health Research, University of Brighton, UK
                Author notes
                [*]Natalie Edelman, Centre for Health Research, Mayfield House, University of Brighton, Village Way, Falmer , BN1 9PH, UK. Email: N.Edelman@ 123456brighton.ac.uk
                Article
                Publisher ID: 10.1177_1355819615612510
                DOI: 10.1177/1355819615612510
                PMC ID: 4904347
                PubMed ID: 26510440
                SO-VID: 00d004e8-9133-4e47-99a4-dc115936f3d1
                Copyright © © The Author(s) 2015
                License:

                This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 3.0 License ( http://www.creativecommons.org/licenses/by-nc/3.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page( https://us.sagepub.com/en-us/nam/open-access-at-sage).

                History
                Categories
                Subject: Perspective

                ScienceOpen disciplines: Social policy & Welfare
                Keywords: public involvement,evaluation,complex intervention
                Data availability:
                ScienceOpen disciplines: Social policy & Welfare
                Keywords: public involvement, evaluation, complex intervention

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