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How to work with patient representatives/PPI groups

How to work with patient representatives/PPI groups

PPI input is often a requirement of funders and usually significantly improves the design of research studies.

PPI groups may be able to help with:

  • reviewing/designing the research project plan and study protocol
  • reviewing/designing study documents e.g. questionnaires, consent forms, patient information leaflets etc.
  • contributing to the ethical approval application and attending the REC meeting
  • helping to draft the lay summary of grant applications
  • helping with participant recruitment or providing insight into a study’s recruitment rates and ways to boost them
  • helping to distribute the study results

Members of a PPI group will be particularly interested in the following:

  • Why should patients take part in the research study? What is the potential impact of the research?
  • How will the study design impact on patients:

    • practically?
    • ethically?
    • financially?
    • physically?
    • psychologically?
  • What are the potential barriers to patients taking part in the research (which might affect recruitment)? How might these be overcome?
  • How can the results of the research be shared with patients and the public?

Your University or Hospital R&D departments will usually hold the contact details of PPI groups. Contact and involve them early in the process. Consider with your supervisor whether you wish to make the PPI representatives co-applicants or collaborators on a grant.

You may be able to discuss the project via telephone/email. If you need to hold a meeting in person consider:

  • location and venue (where would be most convenient for the PPI representatives?)
  • catering
  • an agenda
  • reimbursement of time and travel expenses: consider applying for a small PPI-focused grant and check the INVOLVE guidelines for advice