Title: The Role of Patient Experience Data in Drug Development with Pina Haberl and Sam Morrison

Welcome to this month's episode of the P4A Let’s Talk Rare podcast by Partners4Acess. Today, Georgie and Owen are joined by their colleagues Pina Haberl, Senior Director, and Sam Morrison, Executive Director at Partners4Access. Join us as we discuss the crucial role of patient experience data in drug development.
The conversation explores the need for drug developers to understand patient perspectives and gather data on their experiences, preferences, and needs. Pina and Sam highlight how patient experience data can improve drug development and clinical trial design while differentiating products in the market. They also address challenges in collecting and integrating patient data and the importance of involving patients early in the process.

A study published in Cambridge University Press investigated the utilization of patient preference (PP) data in health technology assessment (HTA) bodies worldwide. An exploratory survey by the HTA International Patient and Citizen Involvement Interest Group gathered insights from 40 members across twelve countries. Results showed that 82.5% of respondents
formally considered PP data in HTA reviews, yet only 39.4% reported its frequent inclusion in assessments due to time and resource limitations.
PP data moderately influenced decision-making processes and outcomes, with a higher impact on decision quality. Participants suggested patient advocacy groups should play a primary role in generating and submitting such evidence. The study highlights barriers to broader integration and proposes collaborative workshops for further investigation.