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.
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.
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.
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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Categories: health public health social care all Identifying topics, prioritising and commissioning Designing research Managing research Undertaking research Analysing and interpreting Writing up and disseminating Evaluating journal article Recruitment Implementation and change lessons from direct experience of involvement description of involvement in a research project
Date Entered: 2018/09/19
Date Edited: 2018/09/19