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How embedded is public involvement in mainstream health research in England a decade after policy implementation? A realist evaluation

Wilson, Patricia, Mathie, Elspeth, Poland, Fiona, Keenan, Julia, Howe, Amanda, Munday, Diane, Kendall, Sally, Cowe, Marion, Staniszewska, Sophie, Goodman, Claire and others. (2018) How embedded is public involvement in mainstream health research in England a decade after policy implementation? A realist evaluation. Journal of Health Services Research and Policy, 23 (2). pp. 98-106. ISSN 1355-8196. E-ISSN 1758-1060. (doi:10.1177/1355819617750688) (KAR id:65129)

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Abstract

Objectives: To explore how embedded patient and public involvement (PPI) is within mainstream health research following two decades of policy-driven work to underpin health research with PPI in England.

Methods: Realist evaluation using Normalization Process Theory as a programme theory to understand what enabled PPI to be embedded as normal practice. Data was collected through a national scoping and survey, and qualitative methods to track PPI processes and impact over time within 22 nationally funded research projects.

Results: In research studies that were able to create reciprocal working relationships and to embed PPI this was contingent on: the purpose of PPI being clear; public contributors reflecting research end-beneficiaries; researchers understanding the value of PPI; PPI opportunities being provided throughout the research; and ongoing evaluation of PPI. Key contested areas included: whether to measure PPI impact; seeking public contributors to maintain a balance between being research-aware and an outsider standpoint seen as ‘authentically’ lay; scaling-up PPI embedded within a research infrastructure rather than risk token presence ; and whether PPI can have a place within basic science.

Conclusion: While PPI can be well-integrated within all types of research, policy makers should take account of tensions that must be navigated in balancing the moral and methodological imperatives.

Item Type: Article
DOI/Identification number: 10.1177/1355819617750688
Uncontrolled keywords: health research
Subjects: H Social Sciences > HM Sociology
Divisions: Divisions > Division for the Study of Law, Society and Social Justice > School of Social Policy, Sociology and Social Research > Centre for Health Services Studies
Depositing User: Patricia Wilson
Date Deposited: 08 Dec 2017 14:50 UTC
Last Modified: 29 Oct 2021 14:37 UTC
Resource URI: https://kar.kent.ac.uk/id/eprint/65129 (The current URI for this page, for reference purposes)
Wilson, Patricia: https://orcid.org/0000-0002-5787-9736
Kendall, Sally: https://orcid.org/0000-0002-2507-0350
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