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This PPI Researcher Guidance focuses on PPI –  ‘patient and public involvement.’

Below is the NIHR definition of the ways people get involved in research, showing how ‘involvement’ is distinct from ‘public engagement’ and ‘participation’:

  • Involvement is research done with or by patients and the public, not to, about or for them. It is about working collaboratively with patients and the public and sharing decision-making
  • Engagement focuses on raising awareness, sharing research knowledge and findings
  • Participation is about people giving formal consent and taking part in a trial or study

The term ‘patients’ includes, current, former and potential patients, carers, people who use health and social care services, and people from organisations who represent those using these services. The ‘public’ includes anyone else, people who may be patients in the future or recipients of public health services such as vaccines, weight management services and smoking cessation. 

In the UK and internationally these terms are not always used consistently in research. PPI is more commonly referred to as ‘patient engagement’ across Europe, the USA and in pharmaceutical or commercial trials.

In this Guidance the term ‘PPI contributor’ is used to mean a member of the public or patient who is taking part in PPI work.

Other commonly used terms across PPI are:

  • Expert by experience
  • Lay representative/member
  • Lay researcher
  • Patient (or carer) representative/member
  • Patient research consultant
  • PPI representative/member
  • Public representative
  • Research partner    
  • User/service user    

Find out more: