• P4A Let's Talk Rare: The Life Science Podcast

  • De: Partners4Access
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P4A Let's Talk Rare: The Life Science Podcast Por arte de portada

P4A Let's Talk Rare: The Life Science Podcast

De: Partners4Access
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  • Welcome to P4A Let’s Talk Rare, a monthly podcast highlighting the most important developments in the world of rare diseases orphan drug, cell and gene therapy, hosted by Georgie Rack and Owen Bryant of Partners For Access. To find out more about Partners For Access and our commitment to sustainable orphan drug access for patients with high unmet need, visit partners4access.com
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Episodios
  • The Role of Patient Experience Data in Drug Development with Pina Haberl and Sam Morrison

    The Role of Patient Experience Data in Drug Development with Pina Haberl and Sam Morrison
    May 3 2024
    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 Morrison Bio: Sam is an Executive Director at Partners4Access (P4A) with over 15 years of experience in market access consultancy. She has gained considerable insight into health systems across Europe and the USA, as well as other major markets, including Japan, China, and Brazil, as well as many Central and Eastern European markets. Sam has conducted many market access due diligence projects, and as pricing and reimbursement have become more essential to the licensing process, she is used to the time pressures and the balance between commercial, clinical development, and market access these projects require. Episode Resources: Pina (Josephina) Haberl on LinkedInSam Morrison on LinkedInOwen Bryant on LinkedInGeorgina Rack on LinkedInPartners4Access Website P4A Let’s Talk Rare podcast on Apple Podcasts
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    35 m
  • World EPA Conference 2024 Special

    World EPA Conference 2024 Special
    Apr 10 2024
    Welcome to this month's episode of Let’s Talk Rare: The Life Science Podcast brought to you by Partners4Access. Host Georgie records this episode at the World EPA Conference in Amsterdam. She holds a panel discussion with Juliette Sinclair-Spence, Sandrine Ruiz, Neil Grubert, and Seema Sondhi, and together we shared our experiences at the EPA conference. We also shared our excitement for AI and patient experience topics, as well as the importance of sustainability and finding new pricing approaches in healthcare. Gain insights on inclusivity and involving patients in drug development. Get ready for a meaningful, engaging conversation that will leave you inspired. Take a deep dive into the benefits of tiered pricing, the challenges and concerns of companies and HTA agencies in joint HTA assessments, the importance of inclusivity, and the importance of involving and educating others. Juliette Sinclair-Spence: Bio and Quote LinkedIn Juliette is the Funder and Chairman of the AK Eye Foundation and is a committed 𝐀𝐜𝐚𝐧𝐭𝐡𝐚𝐦𝐨𝐞𝐛𝐚 𝐊𝐞𝐫𝐚𝐭𝐢𝐭𝐢𝐬 (𝐀𝐊) 𝐏𝐚𝐭𝐢𝐞𝐧𝐭 𝐀𝐝𝐯𝐨𝐜𝐚𝐭𝐞. She has experienced this rare eye disease, and her key learning was that there is much that needs to be done on many fronts, including prevention, education, diagnosis, treatment, research, and support. Her passion for fighting against the disease led her to set up the first worldwide foundation focused on Acanthamoeba Keratitis. “I think involving patients in the drug development process is so important. We need to hear their voices and understand their journeys.” Sandrine Ruiz: Bio and Quote LinkedIn Sandrine, or Sandy as she likes to be called, is the Senior Director of MarketAccess, Pricing, and HEOR at Immunocore. She is an experienced Pricing & Market Access professional with 25+ years in the biopharmaceutical industry. She has hands-on experience in giving strategic and science-based input across the pharmaceutical development workflow, from early stage to late stage, into Market/Patient Access, Pricing & Reimbursement, Payer Strategy, Real World Evidence, Clinical Development, Clinical Operations, and Business Development. “I was really intrigued by the panel discussion on tiered pricing. It's such a hot topic right now, and it was interesting to hear the different perspectives on patient access. I'm also fascinated by digital information and the new trends in our field.” Neil Grubert: Bio and Quote LinkedIn Neil is an Independent Global Market Access Consultant and a multilingual pharmaceutical market access specialist with 30 years of experience tracking the global prescription drug and self-medication markets. He has spearheaded the establishment and growth of Decision Resources’ international market access business. As the author of more than 150 reports covering 20 mature and emerging markets, multiple therapeutic areas, and numerous industry issues, he has earned a reputation for extensive knowledge of market access environments around the world. “Yes, tiered pricing is definitely a challenging issue. Speaking of challenges, the EU HTA implementation has been causing many uncertainties for companies and HTA agencies. We need to navigate it carefully.” Seema Sondhi: Bio and Quote LinkedIn Seema is the Head of Payer Value and Access for the Vaccine Business Unit at Takeda. She is passionate about patient access to innovative medicines and has worked diligently in her country, regional, and global roles to ensure access to pharmaceuticals, vaccines, medical devices, and orphan drugs. This has been achieved through key activities such as influencing global clinical trial development to ensure the collection of appropriate evidence, all the way through to launching products at prices that allow good levels of patient access and ensuring continued access post-launch via mechanisms such as innovative access schemes. “Inclusivity is such an important aspect of our work. We can't just think about it; we have to be involved and educate others actively. Patients need to understand the questions asked and the impact of their input.”
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    29 m
  • Rare Disease Day Special 2024: The Role of Genetic Diagnosis in Rare Conditions with Nick Meade

    Rare Disease Day Special 2024: The Role of Genetic Diagnosis in Rare Conditions with Nick Meade
    Feb 29 2024

    Welcome to this month's episode of the Let’s Talk Rare: The Life Science Podcast by Partners4Acess. Georgie and Owen are joined by Nick Meade, Head of Policy at Genetic Alliance, to discuss the challenges faced by rare patients in accessing life-saving medicines.

    Together they explore the EU joint HTA legislation coming into force in January 2025, and the importance of patient experience data. Nick explains that the challenges for rare patients remain the same, with diagnosis being the first hurdle. He highlights the progress being made in genetic diagnoses and screening but emphasizes the need for more harmonization in Europe.


    Finally, they touch on the concept of patient experience data, which refers to the inclusion of patient perspectives and outcomes in decision-making processes. Nick emphasizes the importance of this data in understanding rare conditions and leveraging it for better access to treatments. They also discuss the various events and initiatives planned by Genetic Alliance for the upcoming Rare Disease Day on February 29th, to raise awareness and share stories of rare conditions.


    Nick Meade Bio:

    Nick Meade is Head of Policy at Genetic Alliance, the largest alliance of organizations supporting people with genetic, rare and undiagnosed conditions in the UK. He has over twenty years of experience in the field and is a member of the NIHR Advanced Therapy Medicinal Product (ATMP) Group.


    Episode Resources:

    Nick Meade on LinkedIn

    Genetic Alliance website

    Partners4Access website

    P4A Let’s Talk Rare podcast on Apple
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    25 m
Ciencia
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