Patient and Public Involvement with impact: going from good to better to best practice

Abstract: Putting lived experience experts (PPI) at the heart of research design and delivery is now considered best practice for many studies, across all methodologies. Some funders require evidence of how this will look. Often, however, it is not a productive experience for either researchers or PPI contributors. To have a genuine impact, PPI needs to be carefully planned, costed, monitored and evaluated. RP and CB have both worked for two decades in public involvement, first as lived experience representatives on studies and then as PPI co-investigators, leads, teachers, and mentors, supporting researchers and students working with a broad range of methodologies. They have learnt through knowledge gathering and practice what works for different studies at various stages, and results in meaningful, constructive impact. During the seminar, they will share what impactful PPI looks like, with approaches and tools for going from good to best practice.

Bio: Charlotte Bevan has worked in PPI for almost two decades. This is both in her capacity as a lived experience expert representing the charity Sands on national programmes, such as MBRRACE-UK, the National Child Mortality Database, and various research projects focussing on perinatal mortality, as well as in her capacity as an independent PPI consultant and lead for research projects, including most recently the Policy Research Unit in Maternal and Neonatal Healthcare (PRU-MNHC), where she has co-led PPI for 6 years, Oxford Labour Monitoring and MATREP (University of Manchester). She and Rachel Plachcinski are currently supporting the Nuffield Department of Women’s and Reproductive Health in developing and delivering departmental and individual PPI procedures and plans. A former journalist, Charlotte became involved in maternity research PPI when her first daughter Hope died shortly after birth in 2001.