ReviewFrontiers in medicine2024
Leveraging patient experience data to guide medicines development, regulation, access decisions and clinical care in the EU.
Review in Frontiers in medicine, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers.
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
17 citing papers in PubMed.
- Patient experiences of idiopathic pulmonary fibrosis (IPF) in China: a multicentre qualitative study.BMJ open respiratory research · 2026Article
- From Participation to Evidence: Listening-Informed Policies and the Epistemic Role of Lived Experience in Population Health.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Exploring Patient Perspectives on Upper Tract Urothelial Cancer: A Qualitative Interview Study.Oncology and therapy · 2026Article
- The Use of Patient-Reported Outcome Measures in Developmental Age: A Complementary Tool for Pediatric Multiple Sclerosis Prognosis.Neurology and therapy · 2026Review
- Advancing the systematic implementation of patient experience data in healthcare decision-making: multi-stakeholder insights on barriers, opportunities and policy ways forward.Health research policy and systems · 2026Article
- From Concept to Claim: An Integrated Lifecycle Roadmap (ILR) for Patient-Centric Endpoints in Clinical Trials and Real-World Evidence.Healthcare (Basel, Switzerland) · 2026Review
- Advancing the Science of Patient Input in Drug Research and Development.Journal of participatory medicine · 2026Article
- Multi-stakeholder use of patient experience data (PED): current state and future opportunities for the application of PED to inform decision-making.Journal of patient-reported outcomes · 2026Review
- Evaluation of the methodology of independent Community Advisory Boards in health products research and development: a mixed-methods cross-sectional survey study.Research involvement and engagement · 2026Article
- Delgocitinib Cream Reduces Itch and Pain in Moderate to Severe Chronic Hand Eczema: Phase 3 DELTA 1 and 2 Pooled Analyses.Dermatology and therapy · 2026Article
- Real-World Data Included in Post-authorisation Measures: A Case Study of Approved Advanced Therapy Medicinal Products in the European Union between 2013 and 2024.BioDrugs : clinical immunotherapeutics, biopharmaceuticals and gene therapy · 2025Article
- Pivotal Studies for Drugs About to Be Launched for Rare Diseases: Will They Better Support Health Technology Assessment and Market Access than in the Past?Journal of market access & health policy · 2025Article
- Optimizing Patient Registries for Regulatory Decision Making - Key Learnings From an HMA/EMA Multistakeholder Workshop.Clinical pharmacology and therapeutics · 2025Review
- Patient Engagement and Patient Experience Data in Regulatory Review and Health Technology Assessment: Where Are We Today?Therapeutic innovation & regulatory science · 2025Review
- What Are the Experiences, Views and Perceptions of Patients, Carers and Clinicians of Glucagon-like Peptide-1 Receptor Agonists (GLP-1 RAs)? A Scoping Review.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Article
- Incorporating patient-reported outcome measures into routine paediatric pharmacovigilance: opportunities for safety monitoring with practical use scenarios from paediatric oncology.Frontiers in pharmacology · 2025Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
9 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Patient experience data (PED), provided by patients/their carers without interpretation by clinicians, directly capture what matters more to patients on their medical condition, treatment and impact of healthcare. PED can be collected through different methodologies and these need to be robust and validated for its intended use. Medicine regulators are increasingly encouraging stakeholders to generate, collect and submit PED to support both scientific advice in development programs and regulatory decisions on the approval and use of these medicines. This article reviews the existing definitions and types of PED and demonstrate the potential for use in different settings of medicines' life cycle, focusing on Patient-Reported Outcomes (PRO) and Patient Preferences (PP). Furthermore, it addresses some challenges and opportunities, alluding to important regulatory guidance that has been published, methodological aspects and digitalization, highlighting the lack of guidance as a key hurdle to achieve more systematic inclusion of PED in regulatory submissions. In addition, the article discusses opportunities at European and global level that could be implemented to leverage PED use. New digital tools that allow patients to collect PED in real time could also contribute to these advances, but it is equally important not to overlook the challenges they entail. The numerous and relevant initiatives being developed by various stakeholders in this field, including regulators, show their confidence in PED's value and create an ideal moment to address challenges and consolidate PED use across medicines' life cycle.
Indexed as
Identifiers
What Socratic holds
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 Socratic graph.