Evidence map›Paper›PMID 41874887›Full record

ArticleJournal of patient-reported outcomes2026

The PRO-CAR-T™ study: achieving excellence in patient and public involvement and engagement.

Karen L Shaw, Sarah E Hughes, Olalekan L Aiyegbusi, John Ansell, Evelyn Chakera, Ronjon Chakraverty, Mark Chatterley, Paul Ferguson, Foram Khatsuria, Rebecca Lloyd and 5 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Journal of patient-reported outcomes, 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

15 authors.

Karen L ShawCentre for Patient Reported Outcome Research (CPROR), Department of Applied Health Sciences, Murray Learning Centre, University of Birmingham, Birmingham, B15 2TT, UK. k.l.shaw@bham.ac.uk.ORCID http://orcid.org/0000-0001-7120-8595
Sarah E HughesCentre for Patient Reported Outcome Research (CPROR), Department of Applied Health Sciences, Murray Learning Centre, University of Birmingham, Birmingham, B15 2TT, UK.
Olalekan L AiyegbusiCentre for Patient Reported Outcome Research (CPROR), Department of Applied Health Sciences, Murray Learning Centre, University of Birmingham, Birmingham, B15 2TT, UK.
John AnsellNational Institute of Health and Care Research (NIHR) Blood and Transplant Research Unit in Precision Cellular Therapeutics, Universities of Birmingham and Oxford, Birmingham and Oxford, UK.
Evelyn ChakeraNational Institute of Health and Care Research (NIHR) Blood and Transplant Research Unit in Precision Cellular Therapeutics, Universities of Birmingham and Oxford, Birmingham and Oxford, UK.
Ronjon ChakravertyNational Institute of Health and Care Research (NIHR) Blood and Transplant Research Unit in Precision Cellular Therapeutics, Universities of Birmingham and Oxford, Birmingham and Oxford, UK.
Mark ChatterleyNational Institute of Health and Care Research (NIHR) Blood and Transplant Research Unit in Precision Cellular Therapeutics, Universities of Birmingham and Oxford, Birmingham and Oxford, UK.
Paul FergusonUniversity Hospitals Birmingham NHS Foundation Trust, Birmingham, UK.
Foram KhatsuriaCentre for Patient Reported Outcome Research (CPROR), Department of Applied Health Sciences, Murray Learning Centre, University of Birmingham, Birmingham, B15 2TT, UK.
Rebecca LloydUniversity Hospitals Birmingham NHS Foundation Trust, Birmingham, UK.
Christel McMullanCentre for Patient Reported Outcome Research (CPROR), Department of Applied Health Sciences, Murray Learning Centre, University of Birmingham, Birmingham, B15 2TT, UK.
J Devin PeipertCentre for Patient Reported Outcome Research (CPROR), Department of Applied Health Sciences, Murray Learning Centre, University of Birmingham, Birmingham, B15 2TT, UK.
Lester PyattNational Institute of Health and Care Research (NIHR) Blood and Transplant Research Unit in Precision Cellular Therapeutics, Universities of Birmingham and Oxford, Birmingham and Oxford, UK.
Vladyslava YaroshNational Institute of Health and Care Research (NIHR) Blood and Transplant Research Unit in Precision Cellular Therapeutics, Universities of Birmingham and Oxford, Birmingham and Oxford, UK.
Melanie J CalvertCentre for Patient Reported Outcome Research (CPROR), Department of Applied Health Sciences, Murray Learning Centre, University of Birmingham, Birmingham, B15 2TT, UK.

Funding

National Institute for Health and Care Research NIHR 203339
6 · The paper itself

Abstract

backgroundPatient and Public Involvement and Engagement (PPIE) is advocated in Patient Reported Outcome (PRO) research, but implementation remains inconsistent and often suboptimal. Many barriers exist, including a lack of understanding about how to apply the principles of PPIE in practice. This paper offers an example of how PPIE can be meaningfully integrated into the development of a digital PRO system within the complex and rapidly evolving field of advanced therapies. The aims are to offer practical insights about how PPIE was conceptualised and operationalised in the context of this study, and use the lessons learned to inform future PPIE strategies for PRO research. METHODOLOGY: Co-produced strategy and delivery plans for PPIE were developed by stakeholders, including patients, carers and members of the public, and drawing on national standards and best practice guidelines. This was followed by activities to recruit additional Patient and Public Partners, provide training, identify opportunities for PPIE and map these to key decision points in the research plan. The success of these strategies and activities was evaluated using a range of reflective and assessment methods, in which personal experiences and formal feedback were combined to assess impact and identify areas for improvement.

resultsEvaluation revealed that PPIE was successfully integrated across project management, study conduct, and dissemination, generating both research value and personal benefits. However, several conceptual, methodological, and practical challenges were encountered. Three key themes emerged: (i) the challenges of distinguishing between research and PPIE in PRO studies (ii) the factors that shape meaningful PPIE and research impact and (iii) areas for improvement. Early planning, finding the right people, and working co-productively were identified as critical facilitators.

conclusionsIntegrating excellent PPIE is achievable in PRO research, even in challenging contexts that involve life-threatening conditions and complex emerging therapies. Although barriers exist, our experience suggests many can be addressed and several actionable recommendations and resources are offered to strengthen PPIE in future PRO research.

Indexed as

Community ParticipationPatient ParticipationPatient Reported Outcome MeasuresHumansAdvanced therapiesAdvanced therapy medicinal productsHaematologyHealth-related quality of lifePatient and public involvementPatient reported outcome measuresPatient reported outcomesPublic engagementQuality of life assessment

Identifiers

PMID41874887
PMCPMC13133316

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.