Elevating Patient and Public Involvement and Engagement in Research: Highlighting the publication gap, ensuring the under-served do not become the under-published
Main Article Content
Abstract
Sharing good practice in Patient and Public Involvement and Engagement (PPIE) often only happens at a local level, with insufficient relevant publications reaching wider audiences, despite the progress made by a few journals. Much of this work remains ‘grey literature’ and fails to gain traction in academia. Our editorial aims to highlight this barrier and showcase examples of good practice PPIE, to raise much needed visibility. The under-publication of PPIE activity and its role in successful research perpetuates the lack of consistent funding and trained staff. To advance, PPIE must be recognised and published as a meaningful contributor to research more widely.
Article Details
How to Cite
EDWARDS, Grace; ADEBAJO, Ade.
Elevating Patient and Public Involvement and Engagement in Research: Highlighting the publication gap, ensuring the under-served do not become the under-published.
Medical Research Archives, [S.l.], v. 14, n. 1, feb. 2026.
ISSN 2375-1924.
Available at: <https://esmed.org/MRA/mra/article/view/7246>. Date accessed: 03 feb. 2026.
doi: https://doi.org/10.18103/mra.v14i1.7246.
Section
Research Articles
The Medical Research Archives grants authors the right to publish and reproduce the unrevised contribution in whole or in part at any time and in any form for any scholarly non-commercial purpose with the condition that all publications of the contribution include a full citation to the journal as published by the Medical Research Archives.
References
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12. Fryer K, Reynolds J, Huang Q et al. Development of a community research link worker role to enable culturally tailored research and empower marginalised communities to participate: the IBISES model. Research Involvement and Engagement. 2025; 11 (122).
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14. Shields G E, Brown L, Wells A, Capobianco L, Vass C. Utilising Patient and Public Involvement in Stated Preference Research in Health: Learning from the Existing Literature and a Case Study. The Patient - Patient-Centered Outcomes Research. 2021; 14, 399–412.
15. Ahmed M, McLean J, Donaldson C, Roy M J, Baker R. Creating the conditions for meaningful and effective PPIE in community based public health research: learning from a UK wide lived experience panel. Research Involvement and Engagement. 2025; 11 (85).
16. Mathieson A, Brunton L, Wilson P M. The use of patient and public involvement and engagement in the design and conduct of implementation research: a scoping review. Implementation Science Communications. 2025; 6 (42).
2. Ocloo J, Garfield S, Dean-Franklin B, Dawson S. Exploring the theory, barriers and enablers for patient and public involvement across health, social care and patient safety: a systematic review of reviews. Health Research Policy and Systems. 2021; 19 (8).
3. Park S. Patient and public involvement (PPI) in evidence synthesis: how the PatMed study approached embedding audience responses into the expression of a meta-ethnography. BMC Medical Research Methodology. 2020; page 20-29.
4. Petticrew M. Publication bias in qualitative research: what becomes of qualitative research presented at conferences? Journal of Epidemiology and Community Health. 2008; 62 (6).
5. Seals D R. Publishing particulars: Part 1. The big picture. American Journal of Physiology-Regulatory, Integrative and Comparative Physiology. 2023; 324 (3).
6. Villalba, C., Jaiprakash, A., Donovan, J. et al. Unlocking the Value of Literature in Health Co-Design: Transforming Patient Experience Publications into a Creative and Accessible Card Tool. Patient. 2018; 11, 637–648.
7. Mockford C, Staniszewska S, Griffiths F, Herron-Marx S. The impact of patient and public involvement on UK NHS health care: a systematic review. International Journal for Quality in Health Care. 2012; 24 (1); 28-38.
8. Chappell L. Inclusive research design to become an NIHR condition of funding. National Institute of Health Research website. 2024; accessed 01/07/ 2025.
https://www.nihr.ac.uk/inclusive-research-design-become-nihr-condition-funding#:~:text=The%20NIHR%20is%20changing%20to%20ensure%20that,and%20costed%20inclusion%20at%20the%20application%20stage**
9. Papoulias S, Brady L M. “I am there just to get on with it”: a qualitative study on the labour of the patient and public involvement workforce. Health research policy and systems / BioMed Central. 2024; 22 (1).
10. Watermeyer R, Rowe G. Public engagement professionals in a prestige economy: ghosts in the machine. Stud High Educ. 2022; 47 (7): 1297–310.
11. Watermeyer R, Lewis J. Institutionalizing public engagement through research in UK universities: perceptions, predictions and paradoxes concerning the state of the art. Stud High Educ. 2018; 43 (9): 1612–24.
12. Fryer K, Reynolds J, Huang Q et al. Development of a community research link worker role to enable culturally tailored research and empower marginalised communities to participate: the IBISES model. Research Involvement and Engagement. 2025; 11 (122).
13. Capobianco L, Faija C, Cooper B et al. framework for implementing Patient and Public Involvement in mental health research: The PATHWAY research programme benchmarked against NIHR standards. Health Expect. 2023; 26, 640‐650.
14. Shields G E, Brown L, Wells A, Capobianco L, Vass C. Utilising Patient and Public Involvement in Stated Preference Research in Health: Learning from the Existing Literature and a Case Study. The Patient - Patient-Centered Outcomes Research. 2021; 14, 399–412.
15. Ahmed M, McLean J, Donaldson C, Roy M J, Baker R. Creating the conditions for meaningful and effective PPIE in community based public health research: learning from a UK wide lived experience panel. Research Involvement and Engagement. 2025; 11 (85).
16. Mathieson A, Brunton L, Wilson P M. The use of patient and public involvement and engagement in the design and conduct of implementation research: a scoping review. Implementation Science Communications. 2025; 6 (42).