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. 

Also discussed is how some regulators and health technology assessment (HTA) bodies have started to accept patient experience data in their decision-making processes, but there is still uncertainty and inconsistency in how it is used. 

There is a call for more collaboration among stakeholders, including payers, policymakers, and patient groups, to establish best practices for collecting, analyzing, and utilizing patient experience data. Pina emphasizes the need for patients to have a seat at the table and be heard in decision-making processes. She mentions initiatives, such as partnering with patients and conferences, but acknowledges that there is still a long way to go.

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.

Pina (Josephina) Haberl Bio:

Pina is a goal-driven, solution-oriented, hands-on, and team-spirited professional with over 10 years of proven Market Access in consulting and industry expertise. She thrives on teamwork and excels at delivering actionable and innovative solutions to succeed in meeting business challenges. 

She specializes in developing and executing Market Access strategies and tactics that ensure success for pharmaceuticals, medical devices, and diagnostics in an international, cross-functional environment. Her understanding of the intricacies and specificities of respective healthcare systems and the diplomatic needs of diverse teams is critical in delivering results and ensuring patients have access to innovations.

Sam M