The role of Patient and Public Involvement Leads in embedding PPI in research
This is a four year qualitative project of iterative design which investigates the processes by which patient and public involvement (PPI) leads enable collaboration between service users, members of the public and researchers. While considerable work is being undertaken on research professionals’ as well as service users’ and carers’ views on the barriers and facilitators of PPI in research, the work of PPI leads has received scant attention to date.
Through a series of semi structured interviews, participant observation and workshops, this project explores how PPI leads articulate the challenges of such collaboration, how their perspectives relate to those of other partners including service users and the public, and how their work is represented in funder and public facing documents. It asks how the labour of enabling such collaboration fits within the institutional spaces in which applied health research is undertaken and how PPI leads navigate such spaces.
The project focuses on PPI leads working on NIHR funded research and seeks to map out how the establishment of a ‘PPI workforce’ across the NIHR may facilitate good practice in PPI. The project uses participatory methods, reflective audio diaries and participatory map-making to deepen an understanding of working practices and, in particular, the relational labour that underpins PPI in research.
Later phases in the project will be co-designed with participants of earlier phases in order to strengthen the acceptability of the methods used and to ensure that the study captures what matters to participants.