Abstract
BackgroundThe 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.MethodsThis 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.ResultsWe 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.ConclusionsThe paper concludes about the more general applicability of the Centre’s model for the long-term sustainability of PPI in research.
Highlights
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 Patient and Public Involvement (PPI) and recommendations for good PPI practice
Patient and Public Involvement (PPI) in research is often organized for individual projects and can sometimes be ‘tokenistic’ where there are no relationships between researchers and PPI advisors, is minimal support for PPI and a lack of feedback or follow up
Two reviews of the impact of involvement found that PPI costs money and time [2, 3]
Summary
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. There are many examples of involvement throughout the research cycle, clarifying the roles that lay people may play and models of good practice [1]. We set out our experience of PPI and demonstrate how academic theory about involvement was combined with practical and organizational learning, ensuring sustainability of PPI over time. Combining theory and reflective practice resulted in positive gains for the organization and for the lay people involved
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