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      Mainstreaming public involvement in a complex research collaboration: A theory‐informed evaluation

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          Abstract

          Introduction

          There is an extensive literature on public involvement (PI) in research, but this has focused primarily on experiences for researchers and public contributors and factors enabling or restricting successful involvement in specific projects. There has been less consideration of a ‘whole system’ approach to embedding PI across an organization from governance structures through to research projects.

          Objective

          To investigate how a combination of two theoretical frameworks, one focused on mainstreaming and the other conceptualizing quality, can illuminate the embedding of positive and influential PI throughout a research organization.

          Methods

          The study used data from the evaluation of a large UK research collaboration. Primary data were collected from 131 respondents (including Public Advisers, university, NHS and local government staff) via individual and group interviews/workshops. Secondary sources included monitoring data and internal documents.

          Findings

          CLAHRC‐NWC made real progress in mainstreaming PI. An organizational vision and infrastructure to embed PI at all levels were created, and the number and range of opportunities increased; PI roles became more clearly defined and increasingly public contributors felt able to influence decisions. However, the aspiration to mainstream PI throughout the collaboration was not fully achieved: a lack of staff ‘buy‐in’ meant that in some areas, it was not experienced as positively or was absent.

          Conclusion

          The two theoretical frameworks brought a novel perspective, facilitating the investigation of the quality of PI in structures and processes across the whole organization. We propose that combining these frameworks can assist the evaluation of PI research.

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          Most cited references 18

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          Presenting and evaluating qualitative research.

          The purpose of this paper is to help authors to think about ways to present qualitative research papers in the American Journal of Pharmaceutical Education. It also discusses methods for reviewers to assess the rigour, quality, and usefulness of qualitative research. Examples of different ways to present data from interviews, observations, and focus groups are included. The paper concludes with guidance for publishing qualitative research and a checklist for authors and reviewers.
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            Theoretical directions for an emancipatory concept of patient and public involvement.

            Patient and public involvement (PPI) is now firmly embedded in the policies of the Department of Health in England. This article commences with a review of the changing structures of PPI in English health and social care, largely in terms of their own explicit rationales, using that as a spring board for the development of a general theoretical framework. Arguing that all democratic states face major dilemmas in seeking to meet conflicting demands and expectations for involvement, we identify the diverse and sometimes conflicting cultural and political features embedded in current models of involvement in England, in a context of rapid delegitimation of the wider political system. We identify some of the major inherent weaknesses of a monolithic, single-track model of patient and public involvement in the management and running of health and social care systems. Although the mechanisms and methods for delivering this may vary we suggest the model remains fundamentally the same. We also suggest why the current structures are unlikely to provide an effective response either to the pluralism of values, ideologies and social groups engaged in the sector or to the valuing of lay knowledge which could potentially sustain the social networks essential for effective participation and service improvement. The article proposes a four dimensional framework for analysing the nature of PPI. These dimensions, it is argued, provide the co-ordinates along which new 'knowledge spaces' for PPI could be constructed. These knowledge spaces could facilitate and support the emergence of social networks of knowledgeable actors capable of engaging with professionals on equal terms and influencing service provision.
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              Values associated with public involvement in health and social care research: a narrative review

              Abstract Background Much has been written about public involvement (PI) in health and social care research, but underpinning values are rarely made explicit despite the potential for these to have significant influence on the practice and assessment of PI. Objective The narrative review reported here is part of a larger MRC‐funded study which is producing a framework and related guidance on assessing the impact of PI in health and social care research. The review aimed to identify and characterize the range of values associated with PI that are central elements of the framework. Methods We undertook a review and narrative synthesis of diverse literatures of PI in health and social care research, including twenty existing reviews and twenty‐four chapters in sixteen textbooks. Results Three overarching value systems were identified, each containing five value clusters. (i) A system concerned with ethical and/or political issues including value clusters associated with empowerment; change/action; accountability/transparency; rights; and ethics (normative values). (ii). A system concerned with the consequences of public involvement in research including value clusters associated with effectiveness; quality/relevance; validity/reliability; representativeness/objectivity/generalizability; and evidence (substantive values). (iii) A system concerned with the conduct of public involvement in including value clusters associated with Partnership/equality; respect/trust; openness and honesty; independence; and clarity (process values). Conclusion Our review identified three systems associated with PI in health and social care research focused on normative, substantive and process values. The findings suggest that research teams should consider and make explicit the values they attach to PI in research and discuss ways in which potential tensions may be managed in order to maximize the benefits of PI for researchers, lay experts and the research.
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                Author and article information

                Contributors
                Role: Senior Research Associatef.j.ward@lancaster.ac.uk
                Role: Distinguished Professor
                Role: Senior Research Associate
                Role: Public Adviser
                Role: Public Adviser
                Role: Deputy Director
                Role: Senior Research Associate
                Role: Postdoctoral Research Associate
                Role: Postdoctoral Research Associate
                Journal
                Health Expect
                Health Expect
                10.1111/(ISSN)1369-7625
                HEX
                Health Expectations : An International Journal of Public Participation in Health Care and Health Policy
                John Wiley and Sons Inc. (Hoboken )
                1369-6513
                1369-7625
                19 May 2020
                August 2020
                : 23
                : 4 ( doiID: 10.1111/hex.v23.4 )
                : 910-918
                Affiliations
                [ 1 ] Division of Health Research Faculty of Health and Medicine Lancaster University Lancaster UK
                [ 2 ] CLAHRC North West Coast University of Liverpool Liverpool UK
                [ 3 ] Department of Health Services Research Institute of Psychology, Health and Society University of Liverpool Liverpool UK
                [ 4 ] Research Fellow in Policy and Complex Systems University of Exeter Exeter UK
                Author notes
                [* ] Correspondence

                Fiona Ward, Senior Research Associate, Division of Health Research, Faculty of Health and Medicine, Lancaster University, Lancaster LA1 4YW, UK.

                Email: f.j.ward@ 123456lancaster.ac.uk

                Article
                HEX13070
                10.1111/hex.13070
                7495077
                © 2020 The Authors Health Expectations published by John Wiley & Sons Ltd

                This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

                Page count
                Figures: 2, Tables: 0, Pages: 9, Words: 6514
                Product
                Funding
                Funded by: National Institute for Health Research , open-funder-registry 10.13039/501100000272;
                Categories
                Original Research Paper
                Original Research Papers
                Custom metadata
                2.0
                August 2020
                Converter:WILEY_ML3GV2_TO_JATSPMC version:5.9.1 mode:remove_FC converted:17.09.2020

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