Abstract
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.
Highlights
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 term Patient and Public Involvement (PPI) contributor is often used to describe those involved in this way in health research
This study has demonstrated that working in a collaborative manner with PPI leads, PPI contributors and researchers is important to the success of feedback and to the whole experience of being involved in the PPI process [23]
Summary
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. Some Patient and Public Involvement (PPI) contributors operate independently and work directly with researchers, many are attached, belong to or are members of a PPI group usually facilitated by a PPI lead or co-ordinator. Fredriksson and Tritter [4] make the difference between PPI groups who take a generic ‘public view’ and others who focus on specific health conditions and bring their own experience to the research Researchers often make their first contact with PPI contributors via a PPI lead. There are no accurate figures on how many PPI leads exist within the United Kingdom in organisations such as Universities, hospitals and National Institute of Health Research (NIHR) roles but in 2016, 100 PPI leads attended an NIHR meeting in London [5] At this meeting it was acknowledged that the PPI lead role is very varied and many learning needs were identified. Guidance and articles on PPI often assume that the relationship occurs directly between researcher and PPI contributor, whilst ignoring the role of many PPI leads who, at least in the beginning, initiate or facilitate the relationship
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