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Looking Ahead: The Science of Patient Preference
Written on Wednesday, March 19, 2025
Exploring patient preferences to inform the drug development process has multiple benefits, from aiding healthcare decision-making and improving understanding of how new treatments differ from existing options, to aligning therapies with the needs and values of patients.
In this recently published paper, the authors, who are experts in the field of preference assessment in health and pharma, explore barriers that have limited the use of patient preference information (PPI). They also identify a new value proposition aimed at developing theories to explain variations in patient preferences, increasing the efficiency of PPI generation and building trust in PPI.
“Advancing our scientific understanding behind PPI is crucial because it has the potential to transform medical product development and regulatory decision-making,” says Marco Boeri, Director of Patient Preference at OPEN Health. “By aligning therapies with the needs and values of patients, PPI can help develop new treatments that are more effective and better accepted by patients.”
The number of PPI studies has increased and significant progress has been made in eliciting preferences to inform decision-making in health and pharma. The FDA Center for Drug Evaluation and Research (CDER) has also released new guidance on the use of PPI in benefit–risk assessments, including collecting comprehensive and representative patient input and eliciting what matters to patients.
Despite these advances, barriers such as a lack of clarity on the use of PPI by decision-makers, a need for greater decision-maker trust in PPI, and insufficient time, budgets, and access to specialist expertise have limited the use of PPI to inform decision-making for multiple conditions and drugs.
Boeri and his co-authors, whose findings are published in The Patient – Patient-Centered Outcomes Research, suggest an approach that makes PPI findable, accessible, interoperable, and reusable (FAIR) would increase its value proposition.
“Developing PPI with this FAIR approach is essential for enhancing the value and trustworthiness of PPI,” Boeri says. “By making PPI findable, accessible, interoperable, and reusable, we can ensure that patient voices are effectively integrated into healthcare decision-making, ultimately leading to more patient-centered therapies.”
A FAIR approach to patient preference
Developing FAIR PPI requires a new approach that includes advances in the science of PPI, establishment of a consortium that mirrors the Clinical Data Interchange Standards Consortium (CDISC) or Observational Medical Outcomes Partnership (OPOM) to develop PPI data standards, and research into the reasons for variation in patient preferences.
The science of PPI must also graduate from being a series of empirical observations to theories that explain variations in patient preferences. The overall goal, Boeri explains, is to make PPI generation more efficient and to build trust in PPI. Research into the transferability of PPI is essential, and could be achieved if the results from one patient group and choice context could be generalized to provide insight into patient preferences different patient group and choice contexts.
“The article looks at what could be the standardization of patient preference,” Boeri explains. “To be able to use PPI across multiple activities or compare them or transfer the values, we need to have some sort of interpretability, interoperability, or standardization transferability.”
With this paper, the authors aimed to make such advances in health economics and other fields, along with efforts to characterize the status quo, identify lessons learned, and consider the feasibility of making progress.
Multistakeholder efforts are required to improve the interoperability, standardization, and transferability of PPI. The authors suggest the need to define a research agenda that could inform the development of expected draft PPI guidance from the FDA CDER and the work of the International Council for Harmonisation of Technical Requirements for Pharmaceuticals for Human Use (ICH) Expert Working Group to drive patient-centered drug development.
For more information, view the paper here.
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