Twelve months into a feasibility trial: reflections on three experiences of public and patient involvement in research [version 2; peer review: 1 approved, 2 approved with reservations]

Abstract

In this Open Letter we present reflections from three different perspectives on the integration of public and patient involvement (PPI) in a research trial. We reflect on the experience of having a patient employed as a contract researcher, with no prior research experience, on a feasibility trial of cognitive rehabilitation in multiple sclerosis. This Open Letter is written by the PPI research team member with reflections from a researcher on the trial and the principal investigator. We will discuss some of the changes made and the impacts that have been resulted from of PPI input into the trial. We focus on PPI involvement in participant recruitment, the development of trial material, integration of PPI along the research cycle, and collaboration. We hope that this Open Letter will encourage principal investigators and groups to include PPI members as part of the research team and help patients and members of the public understand what the experience of PPI members is like.