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        Reciprocal Relationships and the Importance of Feedback in Patient and Public Involvement: A Mixed Methods Study

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        Mathie_et_al_2018_Health_Expectations.pdf (PDF, 342Kb)
        Author
        Mathie, Elspeth
        Wythe, Helena
        Munday, Diane
        Millac, Paul
        Rhodes, Graham
        Roberts, Nick
        Smeeton, Nigel
        Poland, Fiona
        Jones, Julia
        Attention
        2299/20783
        Abstract
        Background: Reciprocal relationships between researchers and patient and public involvement (PPI) contributors can enable successful PPI in research. However, research and anecdotal evidence suggest that researchers do not commonly provide feedback to PPI contributors thus preventing them from knowing whether, how or where their contributions were useful to researchers and research overall. Aims: The aim of this study was to explore the variation, types, importance of, and satisfaction with feedback given by researchers to PPI contributors in six PPI groups in England, and identify the barriers to the process of feedback. Methods: An explanatory mixed methods sequential study design with a questionnaire survey followed by semi-structured interviews with researchers and PPI contributors in six PPI groups. PPI contributors were involved in all stages of the research process. Results: Researchers do not routinely give feedback to PPI contributors. Feedback was found to have different meanings: an acknowledgement, impact and study success and progress. PPI contributors who receive feedback are motivated for further involvement; it supports their learning and development and prompts researchers to reflect on PPI impact. The importance of the role of a PPI lead or coordinator to facilitate the process of providing feedback was also highlighted. Conclusion: This study found no generic way to give feedback indicating that mutual feedback expectations should be discussed at the outset. PPI feedback needs to become integral to the research process with appropriate time and resources allocated. PPI feedback can be seen as a key indicator of mature, embedded PPI in research.
        Publication date
        2018-10-18
        Published in
        Health expectations
        Published version
        https://doi.org/10.1111/hex.12684
        Other links
        http://hdl.handle.net/2299/20783
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