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

Abstract Background 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 UK. Even as the National Institute for Health and Social Care Research (NIHR) has had a pioneering role in developing a robust PPI infrastructure for publicly funded health research in the UK, considerable barriers remain to embedding substantive and sustainable public input in the design and delivery of research. Notably, researchers and clinicians report a tension between funders’ orientation towards deliverables and the resources and labour required to embed public involvement in research. These and other tensions require further investigation. Methods Qualitative study with participatory elements. Using purposive and snowball sampling and attending to regional and institutional diversity, we conducted 21 semi-structured interviews with individuals holding NIHR funded formal PPI roles across England. Interviews were analysed through reflexive thematic analysis with coding and framing presented and adjusted through two workshops with study participants. Results We generated five overarching themes which signal a growing tension between expectations put on staff in PPI roles and the structural limitations of these roles: (i) the instability of support; (ii) the production of invisible labour; (iii) PPI work as more than a job; (iv) accountability without control; and (v) delivering change without changing. Conclusions The NIHR PPI workforce have enabled considerable progress in embedding patient and public input in research activities. However the role has not led to a resolution of the tension between organisational time and PPI time but rather to its displacement and – potentially - its intensification. We suggest that the expectation to ‘deliver’ PPI hinges on a paradoxical demand to deliver a transformational intervention that is fundamentally divorced from any labour of transformation. We conclude that ongoing efforts to transform health research ecologies so as to better respond to the needs of patients will need to grapple with the force and consequences of this paradoxical demand.