Patient and Public Involvement (PPI)

We are committed to actively involving patients and the public in our research as we believe that it improves the quality of our studies.

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What is PPI?

Patient and Public Involvement in research is described as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. It is an active partnership between patients, the public, and researchers in the research process.

Who are "Patients and the Public"?

When using the term ‘patients and the public’ we follow the NIHR definition and include patients and potential patients, carers, people who use health and social care services, members of the public who are the potential recipients of health promotion programmes, and people from organisations that represent people who use these services.

We also consider active trial participants - individuals taking part in the study in question - a key component of PPI as they offer direct and unique experiences from participating in the study. We do not believe that involving participants should replace the involvement of patients or public members, and we see both approaches as complementary.

Why involve patients and the public in research?

The reasons to have PPI in research will be specific to each trial, but some general benefits might include:

• Identifying what research topics are important to investigate, which might be different from what researchers had thought.
• Influence on research question and design, for example, by suggesting measures that are important to people who use services that could influence the outcome measures of a research study.
• Getting different perspectives. PPI will bring different views than those of professional researchers. They can contribute with their own expertise and lived experiences.
• Improving research quality and relevance. PPI can influence the way research is planned and carried out to improve the experience for people taking part in the research.
• Improving recruitment and retention. PPI can help increase the number of participants who agree to be in the research by making sure they are given good quality information and are treated with respect.
• Improves the effectiveness of research findings implementation. PPI can improve public awareness and understanding of findings which will help adoption of associated change. 
• Improves the dissemination of the results, making it more likely that the findings are provided in plain English and widely disseminated.

Read more about how we are taking PPI forward at the MRC CTU at UCL in the sections below.