The mutual benefits of patient and public involvement in research: an example from a feasibility study (MoTaStim-Foot)

Abstract

Plain English summary 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.

Keywords

• Patient and public involvement (PPI)
• Advisors
• Value
• Respect
• ‘Public participation’
• ‘Patient involvement’