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

Jinks, Clare; Carter, Pam; Rhodes, Carol; Beech, Roger; Dziedzic, Krysia; Hughes, Rhian; Blackburn, Steven; Nio Ong, Bie

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Pam Carter

Carol Rhodes

Roger Beech

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.

Journal Article Type Article
Acceptance Date Dec 1, 2013
Online Publication Date Jan 19, 2015
Publication Date Dec 1, 2013
Journal J Care Serv Manag
Print ISSN 1750-1679
Publisher Maney Publishing
Peer Reviewed Peer Reviewed
Volume 7
Issue 4
Pages 146 - 154
Keywords Patient and public involvement, Research, Sustainability, Infrastructure support, Leadership
Publisher URL


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