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. 2018 Dec;21(6):1183-1190.
doi: 10.1111/hex.12825. Epub 2018 Aug 29.

Public involvement in health and social sciences research: A concept analysis

Mel Hughes  1 , Catherine Duffy  1
Affiliations

Public involvement in health and social sciences research: A concept analysis

Mel Hughes et al. Health Expect. 2018 Dec.

Abstract

Background: Research funding bodies have significantly increased emphasis on the need for public involvement in research with the requirement to evidence effective methods and approaches to achieving this. Specific definitions and approaches within published research remain tokenistic and vague.

Objective: The concept analysis explores and clarifies the nature and meaning of public involvement in health and social sciences research and identifies operational definitions which can be used to guide, develop and evaluate public involvement in research activity.

Search strategy: A literature search was conducted using online databases. Systematic literature reviews and broader studies on the impact of PPI were included as was grey literature such as guidance from INVOLVE and research funding bodies. Limits were set to papers published in the last 10 years and in the English language. A concept analysis framework adapted from Rodgers (Concept Development in Nursing: Foundations, Techniques and Applications. London, UK: Saunders; 2000) and Walker and Avant (Strategies for Theory construction in Nursing. Boston, MA: Pearson Prentice Hall; 2005) was applied.

Main results: Five operational definitions were developed from the concept analysis: undefined involvement; targeted consultation; embedded consultation; co-production; and user-led research. Typical examples of each approach were identified from the literature. Defining attributes included having clear and agreed meaning and purpose for any involvement; reciprocal relationships; and value and recognition of the expertise of all those involved.

Conclusions: The authors argue the need for researchers to more explicitly incorporate and evaluate details of approaches used. Impact of public involvement on a research study should be identified when reporting on findings to prevent tokenistic practices where involvement is viewed as secondary to the core research process.

Keywords: PPI; co-production; health; participatory research; public and patient involvement; social sciences; social work; user-controlled research; user-led research.

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References

    1. Davies K, Gray M, Webb A. Putting the parity into service‐user participation: an integrated model of social justice. Int J Soc Welf. 2014;23:119‐127.
    1. Callard F, Rose D. The mental health strategy for Europe: why service user leadership in research is indispensable. J Ment Health. 2012;21(3):219‐226. - PubMed
    1. Rose D, Carr S, Beresford P. Widening cross‐disciplinary research for mental health: what is missing from the Research Councils UK mental health agenda? Disabil Soc. 2018;33(3):476‐481.
    1. Oliver S, Rees R, Clarke‐Jones L, et al. A multidimensional conceptual framework for analysing public involvement in health services research. Health Expect. 2008;11(1):72‐84. - PMC - PubMed
    1. McLaughlin H. Keeping service user involvement in research honest. Br J Soc Work. 2009;40:1591‐1608.

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