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Patient, Carer & Public Involvement & Engagement

Patient, Carer & Public Involvement & Engagement (PCPIE) in research is the creation of a partnership between patients, carers and the public, and researchers, to try to make the research process more effective.

For some time now it has been considered good practice to involve patients, carers and the public in research. The involvement of patients, carers and the public in research can lead to the development of more relevant research questions and many funding bodies, such as the National Institute for Health Research (NIHR) now ask if patient, carer and public involvement has been part of the research process.

The National Research Ethics Service (NRES) will ask about plans for public involvement in your research if you apply for ethical approval.

Funders also wish to see how researchers have collaborated with patients, carers and the public and how patient needs and expectations have been incorporated into research plans. It is also expected that any PCPIE involvement in a project is planned and costed for within the research design.

Examples of patient, carer and public involvement are:

  • commenting on research proposals/applications
  • as co-applicants on a research project
  • involvement in identifying research priorities
  • helping inform the design of data collection tools, for example, piloting a questionnaire
  • as members of a project advisory or steering group
  • commenting and developing patient information leaflets or other research materials