title: Sustaining patient and public involvement in research: A case study of a research centre.
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 beyondad hocinvolvement. This allows PPI in research to be integrated in the infrastructure and sustainable.
authors.affiliation: Arthritis Research UK Primary Care Centre, Institute of Primary Care and Health Sciences, Keele University, UK.
authors.forename: Clare
authors.initials: C
authors.lastname: Jinks
authors.affiliation: Social Science Applied to Healthcare Improvement Research (SAPPHIRE) Group and East Midlands Research Design Service, Department of Health Sciences, University of Leicester, UK.
authors.forename: Pam
authors.initials: P
authors.lastname: Carter
authors.affiliation: Arthritis Research UK Primary Care Centre, Institute of Primary Care and Health Sciences, Keele University, UK.
authors.forename: Carol
authors.initials: C
authors.lastname: Rhodes
authors.affiliation: Arthritis Research UK Primary Care Centre, Institute of Primary Care and Health Sciences, Keele University, UK.
authors.forename: Roger
authors.initials: R
authors.lastname: Beech
authors.affiliation: Arthritis Research UK Primary Care Centre, Institute of Primary Care and Health Sciences, Keele University, UK.
authors.forename: Krysia
authors.initials: K
authors.lastname: Dziedzic
authors.affiliation: Arthritis Research UK Primary Care Centre, Institute of Primary Care and Health Sciences, Keele University, UK.
authors.forename: Rhian
authors.initials: R
authors.lastname: Hughes
authors.affiliation: Arthritis Research UK Primary Care Centre, Institute of Primary Care and Health Sciences, Keele University, UK.
authors.forename: Steven
authors.initials: S
authors.lastname: Blackburn
authors.affiliation: Arthritis Research UK Primary Care Centre, Institute of Primary Care and Health Sciences, Keele University, UK.
authors.forename: Bie Nio
authors.initials: BN
authors.lastname: Ong
keywords: Infrastructure support; Leadership; Patient and public involvement; Research; Sustainability