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.
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.
The reasons to have PPI in research will be specific to each trial, but some general benefits might include:
Read more about how we are taking PPI forward at the MRC CTU at UCL in the sections below.