Please use this identifier to cite or link to this item:
Title: Sustaining patient and public involvement in research: a case study of a research centre.
Authors: Carter, Pam J.
jinks, Clare
Rhodes, Carol
Beech, Roger
Dziedzic, Krysia
Hughes, Rhian
Blackburn, Steven
Ong, Bie Nio
First Published: Dec-2013
Publisher: W. S. Maney & Son Ltd
Citation: Journal of Care Services Management, 2015, 7 (4), pp 146-154
Abstract: The literature on patient and public involvement (PPI) in research covers a wide range of topics. However, one area of investigation that appears under developed is the sustainability and impact of PPI beyond involvement in time-limited research projects. This paper presents a case study of PPI development in one primary care research centre in England, and its approach to making this sustainable using documentary sources and material from a formal evaluation. We provide narrative accounts of the set-up, operation and main processes of PPI, and its perceived impact. PPI requires a long-term perspective with participation and trust growing over time, and both users and researchers learning what approaches work best. PPI is a complex interplay of clarity of purpose, defined roles and relationships, organised support (paid PPI staff) and a well-funded infrastructure. ‘Soft systems’ are equally important such as flexible and informal approaches to meetings, adapting timetables and environments to meet the needs of lay members and to create spaces for relationships to develop between researchers and lay members that are based on mutual trust and respect. This case study highlights that the right combination of ethos, flexible working practices, leadership, and secure funding goes a long way to embedding PPI beyond ad hoc involvement. This allows PPI in research to be integrated in the infrastructure and sustainable.
DOI Link: 10.1179/1750168715Y.0000000003
ISSN: 1750-1679
eISSN: 1750-1687
Version: Publisher Version
Status: Peer-reviewed
Type: Journal Article
Rights: Copyright © the authors, 2015.This is an open-access article distributed under the terms of the Creative Commons Attribution-Non Commercial License ( ), which permits unrestricted use, distribution, and reproduction in any medium non-commercially, provided the original author and source are credited.
Appears in Collections:Published Articles, Dept. of Health Sciences

Files in This Item:
File Description SizeFormat 
1750168715Y%2E0000000003.pdfPublished (publisher PDF)225.17 kBAdobe PDFView/Open

Items in LRA are protected by copyright, with all rights reserved, unless otherwise indicated.