Wilson, P. M., Mathie, E., Poland, F., Keenan, J., Howe, A., Munday, D., Kendall, S., Cowe, M., Staniszewska, Sophie and Goodman, C. (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. doi:10.1177/1355819617750688

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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:	Journal Article
Subjects:	R Medicine > RA Public aspects of medicine
Divisions:	Faculty of Medicine > Warwick Medical School > Health Sciences Faculty of Medicine > Warwick Medical School Faculty of Medicine > Warwick Medical School > Health Sciences > Warwick Research in Nursing
Library of Congress Subject Headings (LCSH):	Medical care -- Government policy -- England, Patients
Journal or Publication Title:	Journal of Health Services Research and Policy
Publisher:	Royal Society of Medicine Press Ltd.
ISSN:	1355-8196
Official Date:	1 April 2018
Dates:	Date Event 1 April 2018 Published 13 April 2018 Available 4 December 2017 Accepted
Date of first compliant deposit:	31 January 2018
Volume:	23
Number:	2
Page Range:	pp. 98-106
DOI:	10.1177/1355819617750688
Status:	Peer Reviewed
Publication Status:	Published
Access rights to Published version:	Open Access
RIOXX Funder/Project Grant:	Project/Grant ID RIOXX Funder Name Funder ID Health Services and Delivery Research Programme National Institute for Health Research http://dx.doi.org/10.13039/501100000272
Related URLs:	Publisher
Open Access Version:	Other

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