Feb 15, 2019
In recent years, we have seen an expansion of patient and public involvement (PPI) activities in research. This has been accompanied by a growing interest in understanding how PPI can best be mobilised and enabled, and in how it can contribute positively to the research process and to impacts from it. The body of literature on these issues has expanded rapidly in the last decade. However, the evidence base on what works, how and why remains fragmented and inconclusive.
RAND Europe was commissioned by The Healthcare Improvement Studies (THIS) Institute at the University of Cambridge to conduct a rapid review of the evidence base on PPI in research. This report reflects on what we know and on knowledge gaps. It aims to help inform THIS Institute's efforts to establish and implement an effective PPI strategy. It should also be of relevance to other organisations and initiatives seeking to involve patients and the public in research in a meaningful and effective way.
Based on a rapid evidence assessment and interviews with experts, the report examines why and how patients and the public get involved with research, what enables meaningful involvement, associated challenges and potential enabling mechanisms, the impact of PPI, and the evaluation of this activity. Based on these insights, we provide a series of recommendations for THIS Institute and other organisations to inform strategies for engaging patients and the public.
Background and context
Profile of the reviewed literature
Why does patient and public involvement in research happen?
How patients and the public are involved in research: an overview of approaches and methods
How can effective contributions from patient and public involvement be enabled?
What are the challenges and barriers to patient and public involvement with research?
The impacts of patient and public involvement in research: what we know and what we do not know
Reflection on key learning points and areas for consideration in future practice
Examples of patient and public involvement in practice
Study design and methods