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      Measuring the impact of participatory research in psychiatry: How the search for epistemic justifications obscures ethical considerations

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          Abstract

          Context

          Both within politics and practice, the field of psychiatry is undergoing a significant transformation, as increasing emphasis is placed on the importance of involving those with lived experience in research. In response to this participatory turn, a push towards measuring the impact of patient involvement is also growing, seeking to identify how participation can improve research.

          Objective

          This paper examines the recent push towards measuring impact in relation to justifications underlying the democratization of research in psychiatry, revealing a disconnect between the two, and harms that could result from a singular focus on measuring impact.

          Discussion

          While those promoting and regulating participatory research tend to focus on the epistemic benefits of such research, many have pointed to both epistemic and ethical justifications underlying participatory research. The ethical reasons for involving service users loom especially large in psychiatry, given its unique history of abuse, the ways diagnoses can be utilized as tools for oppression, and the prevalence of coercion. The current focus on measuring the impact of involvement can be harmful, in that it obscures ethical reasons in favour of epistemic ones, potentially exacerbating issues common to participatory research, such as role confusion and ineffective, tokenistic participatory efforts.

          Conclusions

          We argue that to take the ethical reasons behind involvement in mental health research seriously will involve looking beyond impact and towards sharing power. We suggest three ways this can be done: measuring more than impact, building service user capacities and sharing power in realms outside of research.

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          Most cited references49

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          Patient engagement in research: a systematic review

          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.
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            Mapping the impact of patient and public involvement on health and social care research: a systematic review.

            There is an increasing international interest in patient and public involvement (PPI) in research, yet relatively little robust evidence exists about its impact on health and social care research. To identify the impact of patient and public involvement on health and social care research. A systematic search of electronic databases and health libraries was undertaken from 1995 to 2009. Data were extracted and quality assessed utilizing the guidelines of the NHS Centre for Reviews and Dissemination 2009 and the Critical Appraisal Skills Programme (CASP). Grey literature was assessed using the Dixon-Woods et al. (2005) checklist. All study types that reported the impact PPI had on the health and/or social care research study. A total of 66 studies reporting the impact of PPI on health and social care research were included. The positive impacts identified enhanced the quality and appropriateness of research. Impacts were reported for all stages of research, including the development of user-focused research objectives, development of user-relevant research questions, development of user-friendly information, questionnaires and interview schedules, more appropriate recruitment strategies for studies, consumer-focused interpretation of data and enhanced implementation and dissemination of study results. Some challenging impacts were also identified. This study provides the first international evidence of PPI impact that has emerged at all key stages of the research process. However, much of the evidence base concerning impact remains weak and needs significant enhancement in the next decade. © 2012 John Wiley & Sons Ltd.
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              A systematic review of the impact of patient and public involvement on service users, researchers and communities.

              Patient and public involvement (PPI) in research has expanded nationally and internationally over the last decade, and recently there has been significant attention given to understanding its impact on research. Less attention has been given to the impact of PPI on the people involved, yet it has been shown that the success of PPI in research can be reliant on the processes of engagement between these individuals and communities. This paper therefore critically explores the impact of PPI on service users, researchers and communities involved in health and social care research.

                Author and article information

                Contributors
                Role: Assistant Professorphoebe.friesen@mcgill.ca
                Role: Postdoctoral Researcher
                Role: Ethics Fellow
                Role: Professor
                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
                18 December 2019
                May 2021
                : 24
                : Suppl 1 , Special Issue on Mental Health ( doiID: 10.1111/hex.v24.s1 )
                : 54-61
                Affiliations
                [ 1 ] Department of Population Health Ethox Centre University of Oxford Oxford UK
                [ 2 ] NEUROSEC Department of Psychiatry University of Oxford Oxford UK
                Author notes
                [*] [* ] Correspondence

                Phoebe Friesen, Biomedical Ethics Unit, Department of Social Studies of Medicine, McGill University, Montreal, QC H3A 1X1, Canada.

                Email: phoebe.friesen@ 123456mcgill.ca

                Author information
                https://orcid.org/0000-0002-1529-916X
                Article
                HEX12988
                10.1111/hex.12988
                8137501
                31854081
                b3e3001f-b964-4d72-826a-1c9f1447513f
                © 2019 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.

                History
                : 05 September 2019
                : 02 July 2019
                : 02 October 2019
                Page count
                Figures: 0, Tables: 0, Pages: 8, Words: 7283
                Funding
                Funded by: Wellcome Trust
                Award ID: 104825/Z/14/Z
                Award ID: 203132/Z/16/Z
                Funded by: National Institute for Health Research , open-funder-registry 10.13039/501100000272;
                Award ID: BRC‐1215‐20008
                Award ID: IS‐BRC‐1215‐20005
                Categories
                Special Issue Paper
                Special Issue on Mental Health
                Special Issue Papers
                Custom metadata
                2.0
                May 2021
                Converter:WILEY_ML3GV2_TO_JATSPMC version:6.0.2 mode:remove_FC converted:20.05.2021

                Health & Social care
                impact,mental health,participatory research,public and patient involvement,service users,survivor research

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