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<p>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.</p>

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

  • 期刊论文

  • 出版模式：

    开放获取

  • 发表日期：

    2026年3月24日

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  • 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,
  • Dorothee Oberdhan,
  • Takako Kaneyasu,
  • Olivier Chassany

摘要

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.