Evidence map›Paper›PMID 41876942›Full record

ReviewJournal of patient-reported outcomes2026

Multi-stakeholder use of patient experience data (PED): current state and future opportunities for the application of PED to inform decision-making.

Chisom Kanu, Jessica L Abel, Sarah L Knight, Nicola Williamson, Calvin N Ho, Ana Maria Rodriguez-Leboeuf, Chloe Carmichael, Katarzyna Wac, Rainer Herzog, Susan Vallow and 3 more

Abstract readReview
PubMed Full text at PMC Publisher
In one paragraph

Review 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

13 authors.

Chisom KanuEli Lilly & Company, Indianapolis, IN, USA. kanu_chisom@lilly.com.ORCID http://orcid.org/0000-0002-2621-8652
Jessica L AbelAbbVie, Inc., Florham Park, NJ, USA.ORCID http://orcid.org/0009-0007-2971-3855
Sarah L KnightClarivate, London, UK.ORCID http://orcid.org/0009-0005-3476-3991
Nicola WilliamsonUCB Pharma, Slough, UK.ORCID http://orcid.org/0009-0003-1873-5312
Calvin N HoLate Respiratory and Immunology, AstraZeneca, Gaithersburg, MD, USA.ORCID http://orcid.org/0000-0002-3360-9651
Ana Maria Rodriguez-LeboeufGlobal Preference and RW Practice Lead, Patient Centered Solutions, IQVIA, Montreal, Canada.ORCID http://orcid.org/0000-0001-6335-3223
Chloe CarmichaelClarivate, London, UK.ORCID http://orcid.org/0000-0002-2278-2176
Katarzyna WacQuality of Life Technologies Lab, University of Geneva, Geneva, Switzerland.ORCID http://orcid.org/0000-0002-8060-399X
Rainer HerzogSchool of Economics & Management, University of Geneva, Geneva, Switzerland.ORCID http://orcid.org/0009-0000-3640-4160
Susan VallowNovartis Services Inc, East Hanover, NJ, USA.ORCID http://orcid.org/0000-0002-9426-7632
Dorothee OberdhanFaculty of Health Sciences and Wellbeing, University of Sunderland, Sunderland, UK.ORCID http://orcid.org/0000-0003-1034-9049
Takako KaneyasuDepartment of Biomedical Sciences, College of Life Sciences, Ritsumeikan University Shiga, Shiga Prefecture, Japan.ORCID http://orcid.org/0000-0002-7021-3680
Olivier ChassanyPatient-Reported Outcomes Research (PROQOL), Health Economics Clinical Trial Unit (URC-ECO), Hotel-Dieu Hospital, AP-HP, Paris, France.ORCID http://orcid.org/0000-0001-8361-5809

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Patient experience data (PED) encompass information on patient’s experiences, disease impact, and treatment preferences. PED are critical inputs to the drug development process and help ensure medicines are developed with the interests of patients in mind. The authors (all members of the Industry Special Interest Group and Regulatory and Health Technology Assessment Engagement Special Interest Group of the International Society for Quality of Life Research) have conducted a scoping review of how regulatory agencies, health technology assessment (HTA) bodies, private payers, clinicians, and patients currently use PED for decision-making. Recommendations are provided to address key challenges influencing multi-stakeholder use of PED.

Indexed as

Decision MakingPatient ParticipationPatient Reported Outcome MeasuresPatient SatisfactionTechnology Assessment, BiomedicalDrug DevelopmentHumansDrug regulationHealth technology assessmentPatient engagementPatient experience data

Identifiers

PMID41876942
PMCPMC13136443

What Socratic 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 Socratic graph.