Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
Review
. 2015 Oct;18(5):661-75.
doi: 10.1111/hex.12158. Epub 2013 Dec 10.

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

Felix Gradinger  1 , Nicky Britten  2 , Katrina Wyatt  2 , Katherine Froggatt  3 , Andy Gibson  2 , Ann Jacoby  4 , Fiona Lobban  3 , Debbie Mayes  3 , Dee Snape  4 , Tim Rawcliffe  5 , Jennie Popay  3
Affiliations
Review

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

Felix Gradinger et al. Health Expect. 2015 Oct.

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.

Keywords: engagement; impact; involvement; participation; values.

PubMed Disclaimer

Figures

Figure 1
Figure 1
Data synthesis – mapping of value codings on individual value level (grouping all codings related to individual keyword).
Figure 2
Figure 2
Data synthesis – mapping of value codings on cluster level (as extracted and grouped from statements/paragraphs).
See this image and copyright information in PMC

References

    1. INVOLVE . About INVOLVE ‐ Introduction. Eastleigh: INVOLVE; Available at: http://www.invo.org.uk/find-out-more/what-is-public-involvement-in-resea..., accessed 16 May 2012. p.
    1. Caron‐Flinterman JF, Broerse JEW, Teerling J et al Stakeholder participation in health research agenda setting: the case of asthma and COPD research in the Netherlands. Science and Public Policy, 2006; 33: 291–304. - PMC - PubMed
    1. Barber R, Boote JD, Parry GD, Cooper CL, Yeeles P, Cook S. Can the impact of public involvement on research be evaluated? A mixed methods study Health Expectations, 2012; 15: 229–241. - PMC - PubMed
    1. Boote J, Baird W, Sutton A. Public Involvement in the Design and Conduct of Clinical Trials: A Review. The International Journal of Interdisciplinary Social Sciences, 2011; 5: 91–111.
    1. Boote J, Baird W, Beecroft C. Public involvement at the design stage of primary health research: A narrative review of case examples. Health Policy, 2010; 95: 10–23. - PubMed

Publication types