“I am there just to get on with it”: a qualitative study on the labour of the patient and public involvement workforce (2 September 2024)

Summary

Workers tasked with specific responsibilities around patient and public involvement (PPI) are now routinely part of the organisational landscape for applied health research in the United Kingdom. The National Institute for Health and Care Research (NIHR) has had a pioneering role in developing a robust PPI infrastructure for publicly funded health research in the United Kingdom. However, there are still considerable barriers to embedding worthwhile and sustainable public input in the design and delivery of research. Notably, researchers and healthcare professionals report a tension between funders’ focus on deliverables and the resources and labour required to embed public involvement in research. This study explored this issue and found five overarching themes which signal a growing tension between expectations put on staff in PPI roles and the structural limitations of these roles:

1. the instability of support
2. the production of invisible labour
3. PPI work as more than a job
4. accountability without control
5. delivering change without changing.