Background: Patient and public involvement (PPI) in research has increased steadily over the last two decades and is now both expected and appropriately resourced by many funding bodies, including the National Institute for Health Research (NIHR). However, PPI in research occurs in many different capacities and numerous frameworks exist for reporting or appraising patient involvement activities. The aim of this article is to describe processes involving PPI contributions to an NIHR-funded mixed-methods feasibility study (MoTaStim-Foot). Details of PPI advisors' input, from initial identification and prioritisation of research ideas, to research delivery and dissemination, are discussed.
Methods: Extensive PPI for MoTaStim-Foot is reported, with consideration of Research Design Service (RDS) advice for PPI for research, involving identifying and prioritising: design; grant proposal development; undertaking/managing research; analysing and interpreting; dissemination; implementation; monitoring and evaluation. Two PPI workshops were undertaken; success in meeting UK standards for public involvement was audited against specific success criteria by two researchers, with discussion and consideration regarding how well our PPI achieved inclusive opportunities, working together, support and learning, governance, communications and impact. How PPI can be improved for future trials was also considered. Although the advantages of PPI for researchers were considered, the benefits for PPI advisors were also analysed.
Results: UK standards for public involvement were achieved, along with seven relevant research processes suggested by the RDS. PPI advisor contributions: informed study design; contributed to successful funding; enhanced trial delivery by informing participant information sheets and daily diaries; added value through undertaking note-taker roles in focus groups and helping to analyse focus group transcripts; and assisted in dissemination. However, benefits were mutual with PPI advisors reporting feeling valued and respected, a sense of pride with renewed confidence and purpose in life.
Conclusions: Importance and value of PPI, to researchers and patient advisors, have been highlighted, reinforcing the benefits of working in partnership with PPI advisors. Trial registration ISRCTN 13676183; Central Portfolio Management System ID 30449. Registered 02/01/2015, https://www.isrctn.com/ISRCTN13676183 .
Keywords: Advisors; Patient and public involvement (PPI); Respect; Value; ‘Patient involvement’; ‘Public participation’.
This article reports and analyses our public involvement in the research processes for a study funded by the National Institute for Health Research, the MoTaStim-Foot feasibility study. MoTaStim-Foot explored whether it was feasible to deliver treatments to help people feel their foot better after stroke. The results of this study have been published elsewhere (1). Patient and Public Involvement (PPI) advisors played an important role. They worked voluntarily, actively advising the research team; the term ‘PPI advisor’ is used within this article, following consultation with our PPI advisors. They were involved during idea generation and discussions about whether the study was important to pursue. In addition, they advised the research team during the study setup helping to write the plain English summary, the participant information sheets and advised on other research activities. Following relevant training, PPI advisors were involved in delivering the research including note-taking during focus groups. One PPI advisor also helped analyse the focus group transcripts and attended the UK Stroke Forum to present the results of the study. Reflecting upon the impact of the PPI advisors’ contributions to the MoTaStim-Foot study has evidenced that not only was there great benefit to the research team and process, but our PPI advisors gained satisfaction from being involved in the research, planning, design and delivery. It made them all feel valued and respected and helped one of them find a renewed purpose in life. It is important to understand there can be mutual benefit from PPI advisors’ contributions to research.
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