Patients, carers and people with lived experience can help shape and design health research. However, those involved often do not know if their contributions have made any difference to the research. The lack of feedback from researchers to patient and public involvement (PPI) contributors is a common complaint.
In this talk I will describe our CLAHRC (Collaboration for Leadership in Applied Health Research and Care), East of England study which looked at the frequency, types, importance and satisfaction with feedback within six PPI groups. The idea for the study came from PPI contributors and they were involved throughout. We found that feedback can have several definitions and early discussions of expectations is crucial. I will discuss our co-designed guidance for researchers which is being used to improve PPI feedback, provide different examples of feedback and also some of the challenges. PPI feedback needs to become integral to the research process with appropriate time and resources allocated.
Original languageEnglish
Article numberI002
Number of pages1
Issue number3
Publication statusPublished - 12 Apr 2019
EventBritish Society for Rheumatology Annual conference - ICC Birmingham, Birmingham , United Kingdom
Duration: 30 Apr 20192 May 2019


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