Values associated with public involvement in health and social care research: a narrative review |
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| Authors: | Felix Gradinger MA MSc PhD Nicky Britten BA MSc PhD Katrina Wyatt BSc PhD Katherine Froggatt BSc PhD Andy Gibson BSc MA PhD Ann Jacoby BA PhD Fiona Lobban BA PhD DClinPsy Debbie Mayes BA MSc CQSW Dee Snape RGN BSc PGC MA Tim Rawcliffe BSc MA Jennie Popay BA MA |
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| Affiliation: | 1. Mood Disorders Centre, Psychology, University of Exeter, Exeter, UK;2. Institute of Health Research, University of Exeter Medical School, Exeter, UK;3. Division of Health Research, Faculty of Health and Medicine, Lancaster University, Lancaster, UK;4. Public Health and Policy, Institute of Psychology, Health & Society, University of Liverpool, Liverpool, UK;5. Lancashire Care NHS Foundation Trust, Mental Health Research Network, North West Hub, Preston, UK |
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| Abstract: | BackgroundMuch 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.ObjectiveThe 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.MethodsWe 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.ResultsThree 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).ConclusionOur 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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| Keywords: | engagement impact involvement participation values |
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