The first study examining the role of feedback in health research projects involving patients and members of the public (PPI research*) has found that a fifth of PPI contributors never received feedback on how their input has shaped the research project.
The NIHR-funded study, which has been published in the journal Health Expectations, revealed that 82% (more than four fifths) of PPI contributors felt that receiving feedback was very or quite important and with a similar proportion of researchers (87%) stating that giving feedback was very or quite important. Despite this, the findings showed that 19% of PPI contributors never received feedback and 11% of researchers said they never gave feedback to those who had been involved in research. One contributor, who had been involved with 13 studies, had not received any feedback on the last five research projects they had helped with.
The important contribution that public involvement can make to research is widely accepted, with different models of working together including consultation, collaboration and co-production. Providing feedback to PPI contributors regarding the usefulness of their contributions is an important way of developing positive relationships between researchers and contributors. However, despite the first reports of researchers failing to feedback to PPI contributors being made more than 10 years ago, routine feedback rarely occurs.
The study was led by Elspeth Mathie and Helena Wythe, researchers in the Centre for Research in Public Health and Community Care (CRIPACC) at the University of Hertfordshire, and funded by the NIHR Collaboration for Leadership in Applied Health Research and Care East of England (CLAHRC EoE) Programme.
Elspeth said: 'When feedback is lacking, so too are contributors’ means of knowing whether, how or where their contributions may have been useful and so limit opportunities to identify, improve and enhance involvement in ongoing studies. Absence of feedback can also lead to reduced motivation among PPI contributors to be involved in future projects.'
The idea for this current study came from PPI contributors who were involved throughout, four are co-authors on the paper and two of these Diane Munday and Paul Millac are members of the University of Hertfordshire Public Involvement in Research group (PIRg).
Diane Munday commented: 'I have been a PIR contributor for around 15 years and throughout that time have really valued receiving feedback on my contributions but sadly this has not always been forthcoming. This is why the results of this piece of research are so important; they not only provide a booklet to help researchers they also detail the advantages that routine feedback can bring to both researchers and to lay people, as well as improving research outcomes.'
The study combined results from a questionnaire with interviews to create a picture of the type, extent and variation of feedback given to contributors, the importance of feedback, and the barriers that currently exist to providing it to contributors. A total of 107 participants completed questionnaires, 68 PPI contributors and 39 researchers. The study found that involvement in the research design phase was the most common PPI activity, with 75% of PPI contributors involved at the design stage and universal agreement that of this as the most useful stage for PPI involvement.
The study identified different types of feedback PPI contributors wanted from researchers, including acknowledgement, impact on research and study success and progress. The role of PPI leads in facilitating feedback was examined, and the study found that whilst the majority of feedback had been provided by researchers (67%) PPI leads were instrumental in encouraging feedback and continued liaison between researchers and contributors.
The study also identified changes that could be made to projects to remove the barriers preventing feedback occurring including allowing more time and providing skills and awareness training. Time and budget constraints were found to be barriers to providing feedback. It was also found that researchers failed to prioritise feedback and lacked awareness about the expectation of feedback, or the communication skills to deliver it.
As part of the study Co-designed Guidance for Researchers on how to provide feedback has been produced.
* The term Patient and Public Involvement (PPI) is defined by NIHR INVOLVE as “research being carried out ‘with’ or ‘by’ members of the public, rather than ‘to’ ‘about’ or ‘for’ them.” Members of the public include patients, potential patients, carers as well as people from organisations that represent people who use services.