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Sustaining patient and public involvement in research: a case study of a research centre.

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journal contribution
posted on 25.03.2015, 11:23 by Pam J. Carter, Clare jinks, Carol Rhodes, Roger Beech, Krysia Dziedzic, Rhian Hughes, Steven Blackburn, Bie Nio Ong
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.

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Citation

Journal of Care Services Management, 2015, 7 (4), pp 146-154

Author affiliation

/Organisation/COLLEGE OF MEDICINE, BIOLOGICAL SCIENCES AND PSYCHOLOGY/School of Medicine/Department of Health Sciences

Version

VoR (Version of Record)

Published in

Journal of Care Services Management

Publisher

W. S. Maney & Son Ltd

issn

1750-1679

eissn

1750-1687

Copyright date

2015

Available date

25/03/2015

Publisher version

http://www.maneyonline.com/doi/abs/10.1179/1750168715Y.0000000003

Language

en

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