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Patient and public involvement in primary care research - an example of ensuring its sustainability
Clare Jinks1, Pam Carter2, Carol Rhodes1,3
1Research Institute for Primary Care and Health Sciences, Keele University, Keele, ST5 5BG England.
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.
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