ArticleHealth research policy and systems2026
Advancing the systematic implementation of patient experience data in healthcare decision-making: multi-stakeholder insights on barriers, opportunities and policy ways forward.
Article in Health research policy and systems, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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
0 citing papers in PubMed.
No citing paper in PubMed yet.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundPatient experience data (PED), including patient-reported outcomes (PROs), patient-reported experiences (PREs), patient preferences (PPs), and patient input, are instrumental to better understand patients' perspectives and inform decision-making. Healthcare decision-makers increasingly recognize the value of PED, but challenges impede its implementation in practice. This qualitative study aims to identify stakeholders' insights on these barriers, as well as opportunities and concrete policy ways forward for systematically implementing PED in healthcare decision-making.
methodsSemistructured interviews (n = 38) were conducted with stakeholders from healthcare industry, academia, non-profit organizations, regulatory authorities, pricing and reimbursement (P&R) agencies, and patient organizations across Europe. The interviews were transcribed ad verbatim and analysed qualitatively using thematic framework analysis.
resultsStakeholders raised several barriers impeding the integration of PED in healthcare decision-making: (1) lack of clear European policy frameworks and guidance on standardized requirements and quality criteria for collecting and evaluating PED, particularly concerning the design and implementation of PP studies, (2) lack of validated methods and tools for collecting high-quality PED, such as validated PRO measures, and (3) limited knowledge and transparency on the assessment of PED in regulatory and P&R decision-making. Stakeholders emphasized the importance of providing training on effective patient involvement and more research on validated methods and fit-for-purpose tools. Stakeholders emphasized the importance of fostering collaboration and open dialogue among all stakeholders. Developing guidelines and a comprehensive policy strategy that clearly delineates expectations and responsibilities for each stakeholder group was seen as an important way forward.
conclusionsThis policy- and practice-oriented qualitative study identified concrete ways to advance the systematic use of PED in healthcare decision-making. Suggested actions include developing validated and standardized methods and tools, co-created and flexible guidelines and a clear European policy framework delineating expectations and responsibilities. While there was broad alignment on the direction forward, views diverged on who should take the lead in initiating these efforts, underscoring the importance of continued coordination across stakeholder groups.
Indexed as
Identifiers
What OpenQuestion 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 OpenQuestion graph.