Evidence map›Paper›PMID 41821268›Full record

ArticleHealth expectations : an international journal of public participation in health care and health policy2026

Public and Patient Involvement and Engagement in Clinical Trials: A Multi-Perspective Mixed-Methods Evaluation of the ROWTATE Programme.

Blerina Kellezi, Heather Peacock, Trevor Jones, Ali Gibson, Isabel Andrews, Steve Fallon, Rebecca Lindley, Kate Radford, Kay Bridger, Claire Mann and 3 more

Abstract read
In one paragraph

Article in Health expectations : an international journal of public participation in health care and health policy, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from 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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

13 authors.

Blerina KelleziDepartment of Psychology, Nottingham Trent University, Nottingham, UK.ORCID 0000-0003-4825-3624
Heather PeacockCentre for Academic Primary Care, School of Medicine, University of Nottingham, Nottingham, UK.
Trevor JonesCentre for Academic Primary Care, School of Medicine, University of Nottingham, Nottingham, UK.
Ali GibsonCentre for Academic Primary Care, School of Medicine, University of Nottingham, Nottingham, UK.ORCID 0009-0006-4513-6587
Isabel AndrewsCentre for Academic Primary Care, School of Medicine, University of Nottingham, Nottingham, UK.ORCID 0000-0001-6962-4506
Steve FallonCentre for Academic Primary Care, School of Medicine, University of Nottingham, Nottingham, UK.ORCID 0009-0001-6101-7426
Rebecca LindleyCentre for Academic Primary Care, School of Medicine, University of Nottingham, Nottingham, UK.ORCID 0000-0002-5224-8230
Kate RadfordCentre for Rehabilitation and Ageing Research, School of Medicine, University of Nottingham, Nottingham, UK.ORCID 0000-0001-6246-3180
Kay BridgerDepartment of Psychology, Nottingham Trent University, Nottingham, UK.ORCID 0000-0002-4215-4927
Claire MannCentre for Academic Primary Care, School of Medicine, University of Nottingham, Nottingham, UK.ORCID 0000-0003-2281-7970
Cristina RoadevinNottingham Clinical Trials Unit, School of Medicine, University of Nottingham, Nottingham, UK.ORCID 0000-0001-6279-6823
Marilyn JamesNottingham Clinical Trials Unit, School of Medicine, University of Nottingham, Nottingham, UK.ORCID 0000-0003-0408-7898
Denise KendrickCentre for Academic Primary Care, School of Medicine, University of Nottingham, Nottingham, UK.ORCID 0000-0003-3603-6542

Funding

National Institute for Health and Care Research (NIHR) under its Programme Grants for Applied Research Programme RP-PG-0617-20001
6 · The paper itself

Abstract

backgroundPatient and public involvement and engagement (PPIE) has many benefits for the design, delivery and dissemination of health research, but this can be difficult to achieve. Systematic reporting and evaluation of PPIE in multi-year, multisite and complex clinical trials is very limited. METHODOLOGY: This evaluation presents a multi-perspective description and evaluation of patient and public involvement within a large-scale, multisite, longitudinal research programme focused on developing and evaluating a vocational rehabilitation and clinical psychology intervention for individuals recovering from traumatic injury. Conducted as part of the NIHR-funded ROWTATE research programme (2019-2026), the evaluation explores the scope, impact, and lived experiences of PPIE group members across all phases of the study, from development of the intervention, feasibility study and trial design to intervention delivery, data collection, analysis and dissemination. Employing multiple methods, including open-ended surveys with PPIE group members and researchers, a 'You Said, We Did' activity log, and minute taking, the study identifies key patterns related to PPIE group members' motivations, contributions, personal impact and barriers and facilitators to engagement.

resultsFindings highlight the significant value of PPIE in enhancing study relevance, improving data collection and communication strategies, informing rehabilitation, clinical psychology and health economics components, and shaping intervention delivery. PPIE group members reported a strong sense of purpose and intellectual engagement, despite challenges including communication gaps and role clarity. Researchers valued PPIE contribution to the research, and the positive and enriching experience of working with PPIE group members. Both groups reflected on the barriers and facilitators to PPIE.

conclusionThe evaluation highlights the importance of inclusive, well-supported, and transparent PPIE practices and contributes novel insights into the PPIE role in under-researched domains such as clinical psychology and health economics. PATIENT OR PUBLIC CONTRIBUTION: Traumatic injury survivors were involved in all processes of this evaluation. This includes research design, funding acquisition, data collection, data analysis and interpretation and the write-up of this manuscript. Five traumatic injury survivors are co-authors of this manuscript.

Indexed as

Clinical Trials as TopicCommunity ParticipationPatient ParticipationFemaleHumansLongitudinal StudiesProgram EvaluationRehabilitation, VocationalSurveys and Questionnairesclinical trialscomplex research programmeevaluationmixed‐methodsPPIE

Identifiers

PMID41821268
PMCPMC13080889

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

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.