ArticleHealth research policy and systems2024
"I am there just to get on with it": a qualitative study on the labour of the patient and public involvement workforce.
Article in Health research policy and systems, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
12 citing papers in PubMed.
- Group Poetry and Quilt-Making -Creative Public Involvement Approaches to Contentious Concepts in Frailty Research.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Beyond the Meeting: Patient and Public Involvement Practices and Barriers to Inclusive Participation in Stroke Research.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Building Sustainable Patient Involvement in Rare Condition Research.Molecular genetics & genomic medicine · 2026Article
- Do Androids Dream of Lived Experience? Navigating Risks, Uncertainty, and Best Practices Around Generative AI in Patient and Public Involvement and Engagement.Journal of medical Internet research · 2026Article
- Put purpose before process: lessons from evaluating patient involvement in governance structures in health research organisations.Research involvement and engagement · 2026Article
- Expertise or representation: What gives people with lived experience authority and legitimacy in involvement in research?Research involvement and engagement · 2026Article
- "We don't get asked": including people with workforce experience as public contributors in a workforce-related study about homecare work towards the end-of-life.Research involvement and engagement · 2026Article
- Public Involvement in the Evaluation of Local Government Public Health Interventions in the UK: Lessons From PHIRST Insight.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Layering perspectives: a structured approach to meaningful patient and public involvement and engagement in the RETURN dental trial.Research involvement and engagement · 2026Article
- Review
- Comment on "the public perspective" and "a public perspective" - a PPI professional's reflection on the tension around diversifying public perspectives in public involvement.Research involvement and engagement · 2025Article
- Measuring impacts of patient and public involvement and engagement (PPIE): a narrative review synthesis of review evidence.Research involvement and engagement · 2025Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors.
Funding
Abstract
backgroundWorkers tasked with specific responsibilities around patient and public involvement (PPI) are now routinely part of the organizational landscape for applied health research in the United Kingdom. Even as 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, 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.
methodsThis was a 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.
resultsWe 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.
conclusionsThe 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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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.