ArticleResearch involvement and engagement2020
Between funder requirements and 'jobbing scientists': the evolution of patient and public involvement in a mental health biomedical research centre - a qualitative study.
Article in Research involvement and engagement, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 papers, 2 of them syntheses that pooled it.
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
20 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Facilitators of and barriers to patient and public involvement in mental health research within university settings: a systematic review and meta-synthesis.Psychological medicine · 2025Pooled it
- What Do We Know About Sharing Power in Co-Production in Mental Health Research? A Systematic Review and Thematic Synthesis.Health expectations : an international journal of public participation in health care and health policy · 2024Pooled it
- Meta-Research on the Science of Lived Experience Engagement in Mental Health and Substance Use Health Research: A Scoping Review and Qualitative Synthesis.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- "If the funders said to me that I have to dress in orange, I would dress in orange": findings from qualitative interviews on researchers' experiences of public involvement.Research involvement and engagement · 2026Article
- How Lived Experience Advisory Groups Contribute to the Design and Conduct of Mental Health Research.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- What does taking olanzapine mean to young people with anorexia nervosa and their families? Findings from the OPEN feasibility trial.Journal of eating disorders · 2025Article
- The Importance of Lived Experience: A Scoping Review on the Value of Patient and Public Involvement in Health Research.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Equity in eating disorders: a dialectical approach to stigma, expertise, and the coproduction of knowledge.Journal of eating disorders · 2025Article
- Content, implementation, and evaluation of capacity-strengthening initiatives for public and patient involvement in mental health research: a scoping review protocol informed by implementation science.HRB open research · 2025Article
- Participant engagement and involvement in longitudinal cohort studies: qualitative insights from a selection of pregnancy and birth, twin, and family-based population cohort studies.BMC medical research methodology · 2024Article
- Training and peer-group coaching for pairs of researchers and patient representatives to support continuous two-way learning.Research involvement and engagement · 2024Article
- The Development of Principles for Patient and Public Involvement (PPI) in Preclinical Spinal Cord Research: A Modified Delphi Study.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- The student patient alliance: development and formative evaluation of an initiative to support collaborations between patient and public involvement partners and doctoral students.BMC rheumatology · 2023Article
- Exploring the impact of engagement in mental health and substance use research: A scoping review and thematic analysis.Health expectations : an international journal of public participation in health care and health policy · 2023Article
- Article
- "PPI? That sounds like Payment Protection Insurance": Reflections and learning from a substance use and homelessness study Experts by Experience group.Research involvement and engagement · 2021Article
- Building a culture of engagement at a research centre for childhood disability.Research involvement and engagement · 2021Article
- Evaluation of a patient and public involvement training programme for researchers at a large biomedical research centre in the UK.BMJ open · 2021Article
- 'A limpet on a ship': Spatio-temporal dynamics of patient and public involvement in research.Health expectations : an international journal of public participation in health care and health policy · 2021Article
- The impact of public involvement in health research: what are we measuring? Why are we measuring it? Should we stop measuring it?Research involvement and engagement · 2020Article
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
No grant is acknowledged in the PubMed record.
Abstract
backgroundIn the UK, there has been a strong drive towards patient and public involvement (PPI) in health research. Its benefits include improvements in the quality, relevance and acceptability of research, and empowerment, self-respect and value for service users. Organisational context can significantly influence the operationalisation of PPI. Research has highlighted power asymmetries between clinicians, researchers and service users. A resistance to power sharing, tokenism and assimilation into the existing culture suggest that a consultative, technocratic form of PPI is operating within health research settings. The aim of the study was to explore the development of PPI within a London based mental health biomedical research centre (BRC) over a period of 10 years from its inception.
methodsThis qualitative study compared data from 52 organisational documents and 16 semi-structured interviews with staff and service users associated with PPI within the Maudsley BRC. The data were analysed using inductive thematic analysis. Study design, data collection, analysis and write up were conducted by service user researchers.
resultsOur analysis showed a picture of increasing activity and acceptance of PPI, its alignment with the broader BRC research agenda, progressive involvement of service users in governance, and the development of a collaborative culture in research processes. The presence of salaried service user researchers in the organisation was key to this progress. However, PPI remained localised and under resourced and there was a reluctance to change working practices which resulted in perceptions of tokenism. Service users faced conflicting expectations and were expected to assimilate rather than challenge the organisation's 'biomedical agenda'.
conclusionsService user researchers may play a key role in establishing PPI in a scientific, hierarchical research environment. Adoption of a more democratic approach to involvement would build on the good work already being done and help to transform the culture and research processes. However, such an adoption requires considerable changes to the funding and policy environment orienting health research.
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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.