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Area of Science:

  • Pharmacoeconomics and Health Outcomes Research
  • Patient-Reported Outcomes
  • Drug Development Science

Background:

  • Patient preference information (PPI) incorporation into drug development is crucial for aligning therapies with patient needs and values.
  • Significant barriers hinder PPI utilization, including lack of clarity for decision-makers, insufficient trust, and resource limitations (time, budget, expertise).
  • Enhancing the value of PPI is achievable by adhering to FAIR principles: Findable, Accessible, Interoperable, and Reusable.

Purpose of the Study:

  • To propose a research agenda for developing FAIR PPI.
  • To identify necessary advancements in the science of PPI to overcome current limitations.
  • To explore strategies for increasing the efficiency and trustworthiness of PPI.

Main Methods:

  • Reviewed existing initiatives in data repositories, disease modeling, benefit transfer, and data standards.
  • Analyzed barriers to decision-maker clarity, trust, and resource allocation for PPI.
  • Examined the potential of FAIR data principles to enhance PPI value.

Main Results:

  • Developing FAIR PPI necessitates scientific progress in the field.
  • Establishing a dedicated consortium, similar to CDISC or OMOP, is proposed for creating PPI data standards.
  • Further research is required to understand and explain variations in patient preferences.

Conclusions:

  • Advancing the science of PPI from empirical observations to theoretical frameworks is essential.
  • Developing robust PPI data standards and understanding preference variations will improve efficiency and trust.
  • Implementing FAIR principles and a collaborative consortium can significantly enhance the role of PPI in drug development.