Patient and Public Involvement in Research (PPI)

Definition of PPI

The widely used definition of Patient and Public Involvement in research is:

‘research carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.’

https://www.nihr.ac.uk/patients-carers-and-the-public/i-want-to-help-with-research/
image representing a tree of people with knowledge to share
It means working in collaboration or partnership with patients, carers, service users or the public in planning, designing, managing, conducting, dissemination and translation of research.

Why is Patient and Public Involvement in research important?

PPI is important for three main reasons:

  1. PPI can improve the quality and relevance of research. It can result in better research studies as PPI representatives bring a different perspective to the study and can help prevent poor research questions by focusing on areas that patients consider to be important.
  2. Asking the research questions that patients see as important, and designing and using the methodologies that participants are more likely to engage with, can all help reduce research being wasted.
  3. PPI representatives can inform all parts of the research cycle to help improve the outcomes from the research study and ensure they are relevant to those patients, families, and members of the public who may benefit.
Fig 1. PPI contributors can get involved at all the different stages of the research cycle as illustrated in this diagram

PPI is the right thing to do. A significant amount of health research is publicly funded and therefore researchers should be accountable for their use of that funding. 

For more information see the HSE Research and Development Guide on Patient and Public Involvement in HSE Research.  

Guide no 8: Patient and Public Involvement in HSE Research PDF/728 KB

The guide explains what patient and public involvement (PPI) is, what it involves, and gives suggestions about how to involve contributors in all parts of the research cycle and knowledge translation. It also explains the importance of recognising and valuing PPI and gives examples of good practice.