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. 

Guides 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. 

image Guide8a
Guide no 8a: Cost and Budgeting for Patient and Public involvement in HSE Research PDF/728 KB

The guide gives advice on how to cost and budget for patient and public involvement (PPI) in research projects and applications for research funding. It explains what costs should be included when budgeting for PPI activity in a project and provides advice on good practice. 

  • Changing the narrative: patients, those with lived experience, carers, families as knowledge creators and knowledge users
  • (Poster) PDF / 241KB

    • The poster and presentation describes the involvement of the HSE Research and Development PPI Reference Group in the Knowledge Translation, Dissemination and Impact workstream. The PPI group developed a narrative about their experience of PPI and created guidance on PPI in research for researchers and further guidance on how to communicate research to maximise impact. They presented their work at the HSRUK conference in July 2022.

    Useful Links and Resources for Patient and Public Involvement

    Information on the PPI Ignite network and other useful resources.