Beware Zombies and Unicorns: Toward Critical Patient and Public Involvement in Health Research in a Neoliberal Context
Open accessAbstract
Patient and Public Involvement (PPI) in UK National Health Service (NHS) research has become an imperative in policy and practice. However, lack of clarity on what PPI is (or might be) has given rise to a poorly monitored, complex field of activity, variously framed by the expectations of policy makers, funders, host organisations, researchers, health professionals, individual recruits, volunteers, activists and third sector organisations. The normative shift towards PPI has taken place within a neoliberal policy context, the implications of which needs to be explicitly considered, particularly after the Brexit referendum which has left policy makers and researchers wondering how to better appeal to a distrustful public subjected to ‘post-truth’ and ‘dog whistle’ politics. This commentary examines the prospects for a more critical approach to PPI which addresses context, is evidence-informed and mindful of persistent inequalities in health outcomes, at a time when models of PPI in NHS health research tend to be conceptually vague, derived from limited clinical and managerial settings, and centred on a construction of the abstract, rational, compliant and self-managing patient or lay-person.
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A gap remains between the ideal of co-production, positioned at the top of Arnstein's ladder, and the realities of implementing this ideal within complex, often rigid research settings.
“Despite widespread recognition of the moral imperative [13, 20] and added value of meaningful PPIE in health research [21, 22], a gap remains between the ideal of co-production, positioned at the top of Arnstein’s ladder [19], and the realities of implementing this ideal within complex, often rigid research settings [11, 23].”
From Layering perspectives: a structured approach to meaningful patient and public involvement and engagement in the RETURN dental trial (2026) · cites this paper as [11]
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“Over 500 PPIE frameworks have been identified in the literature [10], which can encourage emphasis on definitions and terminology over the core purpose of involving people whose lives are affected by research [11].”
- Authors
- Madden, M., & Speed, E.
- Affiliations
- University of Leeds (GB)
- University of Essex (GB)
- Corresponding author
- Madden, Mary
- Speed, Ewen
- Venue
- Frontiers in Sociology
- Publisher
- Frontiers Media SA
- Published
- 2017-06-02
- Volume
- 2
- ISSN
- 2297-7775 (ISSN-L)
- OpenAlex
- W2620416402
- Cited by
- 204
- References
- 33
- Citations by year
- 2026: 31 · 2025: 21 · 2024: 13 · 2023: 24 · 2022: 22 · 2021: 21 · 2020: 38 · 2019: 19 · 2018: 15
- FWCI
- 31.92
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- cc-by
- Locations
- Frontiers in Sociology (publishedVersion, cc-by)
- White Rose Research Online (University of Leeds, The University of Sheffield, University of York) (acceptedVersion)
- Open Access at Essex (University of Essex) (acceptedVersion)
- Topics
- Health Sciences › Health Professions › General Health Professions › Mental Health and Patient Involvement
- Health Sciences › Health Professions › General Health Professions › Community Health and Development
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
- Keywords
- patient and public involvement, health research, neoliberalism, National Health Service, Brexit, post-truth, dog whistle politics, public trust, health disparities, lay participation, research governance
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