Commentary on my personal experience of patient and public involvement in the TOPSY trial, 2023, Graham and Goodman

Background to commentary

Patient and public involvement (PPI) in research is now widely expected and encouraged at all stages of the research cycle. PPI members provide expert knowledge of the lived experience and their contribution is crucial. The plethora of publications on PPI has increased almost threefold in the 5-year period from 2017 to 2022 (37,136 results) compared to the preceding 5-year period 2012 to 2017 (12,528 results) (PUBMed search for terms “Patient and Public Involvement”). Many of these publications focus on PPI impact or frameworks, but few focus on the personal experiences of the patient and public representative journey.

In the TOPSY trial (The Treatment Of Prolapse with Self-care Pessary), one patient and public representative, Margaret Graham, started her journey as a patient and public representative at the grant writing stage as a co-applicant in 2017. The TOPSY trial is now in a long term follow-up stage.

The aim of this publication is to highlight, via a personal experience biography, the personal journey that Margaret has taken in her role as a patient and public representative. This account, written by Margaret, highlights the mutual learning between her and the research team. This mutual learning experience included discussions around areas where the study team could have done better but also highlights ideas that did work well. We also hope this will encourage more patient and public representatives to write about their journey to enhance the research communities’ knowledge sharing on this very important role in the research team and to ultimately make being involved in research the best experience it can be.

Open access, https://trialsjournal.biomedcentral.com/articles/10.1186/s13063-023-07254-8