Authors: K Marsh, J Marcos Gonzalez Sepulveda, C Berlin, B Levitan, M Boeri, C G M Groothuis-Oudshoorn, N L Crossnohere, C Jimenez-Moreno, B Liden, I Stoeckert, J Veldwijk, S Watt, B Hauber
Published: Patient, 2025
View publication
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.
