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      Public involvement in health research: what does ‘good’ look like in practice?

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          There is no author summary for this article yet. Authors can add summaries to their articles on ScienceOpen to make them more accessible to a non-specialist audience.

          Abstract

          Plain English summary

          Background

          Patient and public involvement means researchers working with members of the public, patients or carers to jointly plan and carry out research.

          Aim

          This article is written by members of three involvement groups, and the university employees that they work with. We wanted to jointly reflect on what enables our collaborative work, and what the challenges are for everyone involved.

          What we did and how we did it

          We wanted to establish what the literature defines as ‘good’ public involvement and compare this with processes and practices in our involvement groups. We therefore carried out a literature review and each group met separately to discuss what characterises good involvement, and what the challenges are. From these discussions we developed a set of descriptions about each group. We compared the literature review findings with what came out of the discussions within the involvement groups.

          Findings

          Some of the involvement principles from the literature were similar to the priorities of the involvement groups. In addition, the groups identified characteristics of ‘good’ involvement practice that were not reported in the literature: passion and enthusiasm, informal and welcoming meeting spaces, and opportunities to share lived experiences. In this article we present examples of how principles for good involvement are practiced in these groups, and difficulties we have experienced.

          Abstract

          Background

          Patient and public involvement is important for producing relevant and accessible health research. Evidence of impact from involvement is growing, but there is also a need for research on how to create conditions for meaningful collaborations between researchers and public advisers.

          Objective

          We report on a co-produced self-reflective evaluation of involvement practices in three UK research programmes.

          Methods

          A structured review identified research-based principles for ‘good’ public involvement in research. In parallel, members of three involvement groups co-developed statements on how the groups work, and enablers and challenges to collaborative research. The author team analysed these statements using the findings from the review.

          Results

          We identified 11 international articles reporting research-based principles for involvement published between 2013 and 2017. We identified five ‘values’ and seven ‘practice principles’ for ‘good’ involvement. There was convergence between these principles and the priorities of the involvement groups. But the groups also identified additional good involvement practice that were not reported by the literature: passion, enthusiasm, informal and welcoming meeting spaces, and opportunities to share lived experiences. We present examples of how principles for good involvement are practiced in these groups, and highlight principles that have been challenging to implement.

          Conclusions

          Ongoing appraisal of public involvement is crucial. We present a process for self-evaluation, illuminate what ‘good’ means to researchers and public advisers involved in research, and identify areas for improvement. We conclude that provision of resources that enable support to public advisers in turn enable universities and research teams to implement other principles of good involvement.

          Related collections

          Most cited references 27

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          ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study

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            The PCORI Engagement Rubric: Promising Practices for Partnering in Research

            Engaging patients, caregivers, and other health care stakeholders as partners in planning, conducting, and disseminating research is a promising way to improve clinical decision making and outcomes. Many researchers, patients, and other stakeholders, however, lack clarity about when and how to engage as partners within the clinical research process. To address the need for guidance on creating meaningful stakeholder partnerships in patient-centered clinical comparative effectiveness research, the Patient-Centered Outcomes Research Institute (PCORI) developed the PCORI Engagement Rubric (Rubric).
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              Evaluating the impact of service user involvement on research: a prospective case study

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                Author and article information

                Contributors
                k.liabo@exeter.ac.uk
                Journal
                Res Involv Engagem
                Res Involv Engagem
                Research Involvement and Engagement
                BioMed Central (London )
                2056-7529
                31 March 2020
                31 March 2020
                2020
                : 6
                Affiliations
                [1 ]GRID grid.8391.3, ISNI 0000 0004 1936 8024, NIHR Applied Research Collaboration South West Peninsula, , University of Exeter Medical School, ; St Luke’s Campus, Exeter, EX1 2LU UK
                [2 ]GRID grid.8391.3, ISNI 0000 0004 1936 8024, Living Systems Institute, , University of Exeter College of Life and Environmental Sciences, ; Stocker Road, Exeter, EX4 4QD UK
                [3 ]GRID grid.8391.3, ISNI 0000 0004 1936 8024, Peninsula Childhood Disability Research Unit (PenCRU), , University of Exeter Medical School, ; St Luke’s Campus, Exeter, EX1 2LU UK
                [4 ]GRID grid.9835.7, ISNI 0000 0000 8190 6402, NIHR Collaboration for Leadership in Applied Health Research and Care (CLAHRC) North West Coast, , Lancaster University, ; Lancaster, UK
                [5 ]GRID grid.8391.3, ISNI 0000 0004 1936 8024, Peninsula Public Involvement Group, NIHR Applied Research Collaboration South West Peninsula, , University of Exeter Medical School, ; St Luke’s Campus, Exeter, EX1 2LU UK
                [6 ]GRID grid.8391.3, ISNI 0000 0004 1936 8024, PenCRU Family Faculty, Peninsula Childhood Disability Research Unit, , University of Exeter Medical School, ; St Luke’s Campus, Exeter, EX1 2LU UK
                [7 ]GRID grid.9835.7, ISNI 0000 0000 8190 6402, Public Adviser Forum, NIHR Applied Research Collaboration North West Coast, , Lancaster University, ; Lancaster, LA1 4YX UK
                Article
                183
                10.1186/s40900-020-0183-x
                7110674
                © The Author(s). 2020

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. 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.

                Funding
                Funded by: National Institute for Health Research
                Award ID: CLAHRC
                Categories
                Methodology
                Custom metadata
                © The Author(s) 2020

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