Dataset Information

Reciprocal relationships and the importance of feedback in patient and public involvement: A mixed methods study.

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.

SUBMITTER: Mathie E

PROVIDER: S-EPMC6186542 | biostudies-literature | 2018 Oct

REPOSITORIES: biostudies-literature

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Publications

Reciprocal relationships and the importance of feedback in patient and public involvement: A mixed methods study.

Mathie Elspeth E Wythe Helena H Munday Diane D Millac Paul P Rhodes Graham G Roberts Nick N Smeeton Nigel N Poland Fiona F Jones Julia J

Health expectations : an international journal of public participation in health care and health policy 20180414 5

<h4>Background</h4>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.<h4>Aims</h4>The aim of this study was to explore the variation, types, importance of, and satisfact ...[more]

PMID: 29654644

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Project description:BackgroundHealth research in the UK requires patients, those with lived experience and members of the public to be involved in designing and shaping research: many of them have reported that their comments and suggestions are not always acknowledged, and they do not know if their input has been used or is useful. The benefits of feedback from researchers not only create motivation for further involvement but aids learning and development, as well as recording impact. The aims of this study were to improve the feedback experience of Patient and Public Involvement (PPI) contributors. Co-produced feedback processes were designed and implemented in order to change feedback from researchers to PPI contributors in six PPI groups in England.MethodsAn explanatory mixed methods sequential study design was utilised with a comparative questionnaire survey (administered 20 months apart), interviews and a focus group with PPI leads, researchers and PPI contributors. Patient and Public Involvement contributors were involved from initial idea, study design, data analysis through to dissemination.ResultsCo-designed feedback processes were introduced in five of the six PPI groups and there was an overall increase in the frequency of feedback over the period studied. The enablers and barriers to implementing feedback processes were identified, which included the importance of wider institutional level support. PPI leads need to have dedicated time and acknowledge feedback as part of their role. The importance of individual feedback processes designed by, and for each PPI group, rather than a generic one, was also identified as key to successful implementation.ConclusionThe role of the PPI lead is an important facilitator in improving feedback but can easily be overlooked and has been described as invisible. PPI leads can perform an essential bridging role between researchers and members of the public. This study has shown that PPI feedback processes can be implemented if they are part of embedded PPI with explicit expectations, facilitated by a dedicated PPI lead role with sufficient support and resources. The findings have implications beyond this particular study, particularly for those involved in undertaking and funding health and social care research.

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Dataset Information

Reciprocal relationships and the importance of feedback in patient and public involvement: A mixed methods study.

Background

Aims

Methods

Results

Conclusion

Publications

Reciprocal relationships and the importance of feedback in patient and public involvement: A mixed methods study.

Similar Datasets

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