The role of patient and public involvement leads in facilitating feedback: "invisible work"

Research Involvement and Engagement
Elspeth MathieJulia Jones

Abstract

Health 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. An 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. Co-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....Continue Reading

References

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Apr 15, 2018·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Elspeth MathieJulia Jones
Dec 14, 2018·BMJ : British Medical Journal·Antoine BoivinKristin L Carman
Dec 14, 2018·Research Involvement and Engagement·Elspeth MathieJulia Jones
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Apr 9, 2020·Research Involvement and Engagement·Kristin LiaboChristopher Morris

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