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Values associated with public involvement in health and social care research: A narrative review

Gradinger, Felix; Britten, Nicky; Wyatt, Katrina; Froggatt, Katherine; Gibson, Andy; Jacoby, Ann; Lobban, Fiona; Mayes, Debbie; Snape, Dee; Rawcliffe, Tim; Popay, Jennie

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Authors

Felix Gradinger

Nicky Britten

Katrina Wyatt

Katherine Froggatt

Andy Gibson Andy.Gibson@uwe.ac.uk
Associate Professor in Patient and Public Involve

Ann Jacoby

Fiona Lobban

Debbie Mayes

Dee Snape

Tim Rawcliffe

Jennie Popay



Abstract

© 2015 John Wiley & Sons Ltd. 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.

Journal Article Type Article
Publication Date Oct 1, 2015
Journal Health Expectations
Print ISSN 1369-6513
Electronic ISSN 1369-7625
Publisher Wiley Open Access
Peer Reviewed Peer Reviewed
Volume 18
Issue 5
Pages 661-675
Institution Citation Gradinger, F., Britten, N., Wyatt, K., Froggatt, K., Gibson, A., Jacoby, A., …Popay, J. (2015). Values associated with public involvement in health and social care research: A narrative review. Health Expectations, 18(5), 661-675. https://doi.org/10.1111/hex.12158
DOI https://doi.org/10.1111/hex.12158
Keywords patient and public involvement, values, health research, narrative review
Publisher URL http://dx.doi.org/10.1111/hex.12158

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