Information for patients

What is public and patient involvement in research?

The National Institute for Health Research (NIHR) defines public involvement in research as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.

By using the term ‘public’, we are including:

  • Patients and potential patients
  • Carers and people who use health and social care services
  • People from organisations that represent people who use services.

Therefore, when the public gets involved in research, they work alongside researchers to help shape:

  • What research gets done;
  • How it is carried out; and
  • How the results are shared and applied in practice.

Note: being involved is not the same as taking part in research. It is not about taking part in a trial or study to test a new treatment or care option; it is about being a member of the research team that works together to design and run the study.