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

The NIHR PPI workforce has enabled considerable progress in embedding patient and public input in research activities. However, the role has led not to a resolution of the tension between performance management priorities and the labour of PPI, 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.

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Publication Details

Journal
Health Research Policy and Systems
Published
2024-09-02
DOI
https://doi.org/10.1186/s12961-024-01197-5
Citations
6
Primary Topic
Mental Health and Patient Involvement
Type
article
Field-Weighted Citation Impact
5.10

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article

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

Constantina Papoulias, Louca‐Mai Brady
6 citations
Health Research Policy and Systems
Mental Health and Patient Involvement
5.10
article

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

Constantina Papoulias, Louca‐Mai Brady
article en
6 citations

Abstract

The NIHR PPI workforce has enabled considerable progress in embedding patient and public input in research activities. However, the role has led not to a resolution of the tension between performance management priorities and the labour of PPI, 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.

Health Research Policy and SystemsVol. 22(1)
University of Hertfordshire (GB), King's College London (GB)
Kingston University, National Institute for Health and Care Research
Industry, innovation and infrastructure
Openalex Percentile: Top 5%
Mental Health and Patient Involvement
5.10
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