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. 2016 Jan 14:2:1.
doi: 10.1186/s40900-016-0015-1. eCollection 2016.

Patient and public involvement in primary care research - an example of ensuring its sustainability

Clare Jinks  1 , Pam Carter  2 , Carol Rhodes  1   3 , Robert Taylor  4 , Roger Beech  5 , Krysia Dziedzic  1 , Steven Blackburn  1 , Rhian Hughes  1 , Bie Nio Ong  1
Affiliations

Patient and public involvement in primary care research - an example of ensuring its sustainability

Clare Jinks et al. Res Involv Engagem. .

Abstract

Background: The international literature on patient and public involvement (PPI) in research covers a wide range of issues, including active lay involvement throughout the research cycle; roles that patients/public can play; assessing impact of PPI and recommendations for good PPI practice. One area of investigation that is less developed is the sustainability and impact of PPI beyond involvement in time-limited research projects.

Methods: This paper focuses on the issues of sustainability, the importance of institutional leadership and the creation of a robust infrastructure in order to achieve long-term and wide-ranging PPI in research strategy and programmes.

Results: We use the case of a Primary Care Research Centre to provide a historical account of the evolution of PPI in the Centre and identified a number of key conceptual issues regarding infrastructure, resource allocation, working methods, roles and relationships.

Conclusions: The paper concludes about the more general applicability of the Centre's model for the long-term sustainability of PPI in research.

Keywords: Impact; Patient and public involvement; Primary care research; Resource allocation; Sustainability of PPI.

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Figures

Fig. 1
Fig. 1
The organisational structure of patient and public involvement in the Primary Care Research Centre
Fig. 2
Fig. 2
Key links with other organisations dedicated to patient and public involvement in research
Fig. 3
Fig. 3
Examples of the impact of patient and public involvement in research conducted at the Primary Care Research Centre
See this image and copyright information in PMC

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