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Background <p>Patient 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.</p> Methods <p>Semistructured interviews (<i>n</i> = 38) were conducted with stakeholders from healthcare industry, academia, non-profit organizations, regulatory authorities, pricing and reimbursement (P&amp;R) agencies, and patient organizations across Europe. The interviews were transcribed ad verbatim and analysed qualitatively using thematic framework analysis.</p> Results <p>Stakeholders 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&amp;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.</p> Conclusions <p>This 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.</p>

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Advancing the systematic implementation of patient experience data in healthcare decision-making: multi-stakeholder insights on barriers, opportunities and policy ways forward

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2026年5月28日

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  • Alice Vanneste,
  • Io Wens,
  • Peter Sinnaeve,
  • Tom Adriaenssens,
  • Isabelle Huys

摘要

Background

Patient 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.

Methods

Semistructured 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.

Results

Stakeholders 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.

Conclusions

This 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.