Date: 02 May 2018
A new guide has been launched to help researchers improve patient and public involvement (PPI) in their studies.
Guidance for Researchers: Feedback is a new tool providing researchers advice on the best ways to ensure patients, carers, service users and members of public contributing to their work are kept informed of research progress and their input is formally acknowledged.
Public contributors are involved at all stages of the research cycle, from project design, board and panel membership, to taking part in analysis and dissemination. But research by PPI representatives from CLAHRC East of England, who developed the guide, reveals that one-in-five (19%) of public contributors never received feedback for their work.
The team, led by Dr Elspeth Mathie at the University of Hertfordshire, worked together with six PPI groups - including PPI leads and contributors - to co-design feedback forms and guidance in an attempt to improve feedback from researchers and discover some of the barriers to feedback. The guidance provides practical tips on who, why, when, what and how researchers could improve their feedback to PPI contributors.
Dr Mathie said: “The study found that ‘Feedback’ also had different meanings, some patients and public members just wanted a thank you, some wanted to know if the study had been funded or how the study was progressing and others wanted to know if their comments had had an impact on the research itself.
“Feedback can improve PPI contributors’ confidence, motivation and help learning and development and it can also help researchers reflect on PPI impact.”
The guidance, which was also developed with the Research Design Service (RDS) and INVOLVE, is available online.
More results can be found from the team’s co-authored paper in Health Expectations.
PPI feedback has also been advocated as part of the new National Standards for Public Involvement which the NIHR helped develop.
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