What Next for the Science of Patient Preference? Interoperability, Standardization, and Transferability

Kevin Marsh (), Juan Marcos Gonzalez Sepulveda, Conny Berlin, Bennett Levitan, Marco Boeri, Catharina G. M. Groothuis-Oudshoorn, Norah L. Crossnohere, Cecilia Jimenez-Moreno, Barry Liden, Isabelle Stoeckert, Jorien Veldwijk, Stephen Watt and Brett Hauber
Additional contact information
Kevin Marsh: Evidera
Juan Marcos Gonzalez Sepulveda: Duke University
Conny Berlin: Novartis
Bennett Levitan: Janssen Research & Development
Marco Boeri: OPEN Health
Catharina G. M. Groothuis-Oudshoorn: University of Twente
Norah L. Crossnohere: The Ohio State University
Cecilia Jimenez-Moreno: Kielo Research
Barry Liden: USC Schaeffer Center
Isabelle Stoeckert: Bayer
Jorien Veldwijk: Erasmus University Rotterdam
Stephen Watt: Pfizer
Brett Hauber: Pfizer

The Patient: Patient-Centered Outcomes Research, 2025, vol. 18, issue 2, No 2, 108 pages

Abstract: Abstract Using patient preference information (PPI) to incorporate patient voices into the drug development lifecycle can help align therapies with the needs and values of patients. However, several barriers have limited the use of PPI, including a lack of clarity on its use by decision-makers, a need for greater decision-maker trust in PPI, and a lack of time, budgets, and access to specialist expertise. The value proposition for PPI could be enhanced by making it FAIR: Findable, Accessible, Interoperable, and Reusable. To support the development of a research agenda to deliver FAIR PPI, we reviewed related endeavors in the development of repositories of existing studies, disease models, benefit transfer, and common data standards. We concluded that developing FAIR PPI would require advances in the science of PPI, including the establishment of a consortium, mirroring the Clinical Data Interchange Standards Consortium (CDISC) or Observational Medical Outcomes Partnership (OPOM), to develop PPI data standards, and research into the sources of variation in patient preferences. This will require the science of PPI to graduate from being a body of empirical observations to developing theories that explain variations in patient preferences, simultaneously driving both efficiency in the generation of PPI and trust in PPI.

Date: 2025
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DOI: 10.1007/s40271-025-00727-9

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