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      Exploring patient and public involvement (PPI) and co-production approaches in mental health research: learning from the PARTNERS2 research programme

      research-article
      The PARTNERS2 writing collective 1 , 2 , 3 , 4 , 5
      Research Involvement and Engagement
      BioMed Central
      Experiential expertise, Collaborative methodologies, Reflective accounts, Service user researcher, Cooperative inquiry

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          Abstract

          Background

          Patient and Public Involvement (PPI) in research is a growing field of work, incorporating experiential knowledge within research processes. Co-production is a more recent PPI approach that emphasises the importance of power-sharing to promote inclusive research practices, valuing and respecting knowledge from different sources, and relationship building. Applying co-production principles in research trials can be difficult, and there are few detailed worked examples or toolkits. This paper explores the successes and challenges encountered by one research team.

          Methods

          Our paper is written by a team of 21 people working on PARTNERS2, led by a smaller co-ordinating group. Using a co-operative style inquiry, the authors have reflected on and written about their experiences; analysis of the resulting 15 accounts provided examples of how PPI and co-production were delivered in practice.

          Results

          We reveal varied and complicated experiences as we developed our collaborative approach across the entire research programme. Four main themes emerge from reflective accounts which describe aspects of this process: (1) recognising the importance of ‘emotional work’; (2) developing safe spaces to create and share knowledge; (3) some challenges of using our personal identities in research work; and (4) acknowledging power-sharing within the research hierarchy. We also found continual relationship building, how different forms of expertise were valued, and stigma were central to shaping what work was possible together. Other important practices were transparency, particularly over decision making, and clear communication.

          Conclusions

          Our work provides one example of the ‘messy’ nature of collaborative research in practice. The learning we surface was contextual, generated within a large-scale research programme, but applicable to other studies. We found for success there needs to be an acknowledgement of the importance of emotional work, creating safe spaces to co-produce, transparency in decision making and reflection on the difficulties of using personal identities in research work including for service user researchers. These elements are more important than existing guidelines suggest. Implementation of actions to support emotional work, will require changes within individual teams as well as institutions. Introducing reflective practice in teams may be helpful in identifying further improvements to inclusive research practice.

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          Most cited references13

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          Doing Mixed Methods Research Pragmatically: Implications for the Rediscovery of Pragmatism as a Research Paradigm

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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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              Power, Privilege and Knowledge: the Untenable Promise of Co-production in Mental “Health”

              This paper examines the concept and practice of coproduction in mental health. By analyzing personal experience as well as the historical antecedents of coproduction, we argue that the site of coproduction is defined by the legacy of the Enlightenment and its notions of “reason” and “the cognitive subject.” We show the enduring impact of these notions in producing and perpetuating the power dynamics between professionals, researchers, policy makers and service users within privileged sites of knowledge production, whereby those deemed to lack reason—the mad and the racialized mad in particular—and their knowledge are radically inferiorised. Articulating problems in what is considered knowledge and methods of knowing, we argue that modern “psy” sciences instantiates the privilege of reason as well as of whiteness. We then examine how the survivor movement, and the emergent survivor/mad knowledge base, duplicates white privilege even as it interrogates privileges of reason and cognition. Describing how we grapple with these issues in an ongoing project—EURIKHA—which aims to map the knowledge produced by service users, survivors and persons with psychosocial disabilities globally, we offer some suggestions. Coproduction between researchers, policy makers and those of us positioned as mad, particularly as mad people of color, we argue, cannot happen in knowledge production environments continuing to operate within assumptions and philosophies that privilege reason as well as white, Eurocentric thinking. We seek not to coproduce but to challenge and change thinking and support for psychosocial suffering in contexts local to people's lives.
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                Author and article information

                Contributors
                vanessapinfold@mcpin.org
                Journal
                Res Involv Engagem
                Res Involv Engagem
                Research Involvement and Engagement
                BioMed Central (London )
                2056-7529
                21 September 2020
                21 September 2020
                2020
                : 6
                : 56
                Affiliations
                [1 ]GRID grid.490917.2, McPin Foundation, ; London, UK
                [2 ]GRID grid.439737.d, ISNI 0000 0004 0382 8292, Lancashire Care NHS Foundation Trust, ; Lancashire, UK
                [3 ]GRID grid.6572.6, ISNI 0000 0004 1936 7486, University of Birmingham, ; Birmingham, UK
                [4 ]GRID grid.11201.33, ISNI 0000 0001 2219 0747, University of Plymouth, ; Plymouth, UK
                [5 ]GRID grid.8391.3, ISNI 0000 0004 1936 8024, University of Exeter, ; Exeter, UK
                Article
                224
                10.1186/s40900-020-00224-3
                7507647
                32974052
                3876321e-09f4-42d9-a1c2-9e6baa6ff59d
                © The Author(s) 2020

                Open AccessThis 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
                : 22 October 2019
                : 27 July 2020
                Funding
                Funded by: FundRef http://dx.doi.org/10.13039/501100007602, Programme Grants for Applied Research;
                Award ID: RP-PG-061120004
                Categories
                Research Article
                Custom metadata
                © The Author(s) 2020

                experiential expertise,collaborative methodologies,reflective accounts,service user researcher,cooperative inquiry

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