Provocation Panel

Day 1: Thursday, 12 September

Health research increasingly incorporates patient and public involvement (PPI) elements to ensure that people and communities most likely to benefit are adequately represented. When studies focus on minoritised groups, such as people experiencing homelessness, funding applicants are often required to demonstrate how they will include participatory opportunities for people with lived experience of the subject being explored. This involvement might include co-design of research tools, sense-checking of findings or ongoing project steering.This shift has been widely celebrated as an important and progressive step, but the benefits and costs for people with lived experience have not been sufficiently interrogated.Our panel will explore whether funders' PPI requirements can lead to researchers involving people with lived experience without having the capacity or skills to provide them with adequate support and respect. Further, if PPI is a default requirement, do researchers genuinely view lived experience insight as valuable and meaningful, or just another box to tick in a funding application process? We will also ask difficult questions about power imbalances.Taking homelessness as an example, we will explore ways in which we can continue to include and respect the voices of people with lived experience without falling into these traps and ask what needs to change in future health research.Our panel will include a researcher from Groundswell -- a charity with an explicit focus on lived experience -- and representation from academic health research, research funding bodies, and people whose insight has been sought for research projects because of their own lived experience.