In this episode of the EU Patients Podcast, we spotlight the IDERHA project and explore how real-world health data can help shape better healthcare decisions for patients across Europe.Host Flavia Topan is joined by Prof. Bethany Shinkins and Ine Vandersmissen to unpack the growing role of real-world data and real-world evidence in healthcare decisions.Together, they discuss why traditional clinical trials do not always capture the full diversity of patient experiences, how real-world evidence can complement existing research, and what needs to happen to build trust in the use of heterogeneous health data.The conversation also looks at the recommendations developed within the IDERHA project to support the acceptance of real-world evidence in regulatory and HTA decision-making, with a strong focus on transparency, scientific robustness, and meaningful patient involvement.

In this episode, we mark World Haemophilia Day 2026 by looking both at where the bleeding disorders community stands today and where it hopes to be in the future.The European Haemophilia Consortium (EHC) is creating a “Letter to the Future,” a time capsule to be opened in 2039 for its 50th anniversary. This initiative captures the experiences, challenges, and aspirations of people living with haemophilia and other bleeding disorders across Europe.To explore this journey, we are joined by Dr William McKeown - EHC Steering Committee Member, clinician, researcher, and patient - who shares insights from both personal and professional perspectives. Together, we reflect on progress made, ongoing challenges, and what it means to live well and age well with a bleeding disorder.What might the future of care, access, and quality of life look like? And what message would today’s community send to the next generation?

In this final episode of the EDiHTA mini-series, we explore how digital medical devices are transforming healthcare across Europe. Host Flavia Topan is joined by patient advocate Dave Chuter to discuss key issues such as patient safety, trust, data protection, and the role of patients in health technology assessment (HTA). Learn how the EDiHTA project is working to create a more patient-centred and reliable framework for evaluating digital health technologies.

In this episode, former Executive Director Anca Toma speaks with Michal Rataj, Vice President of the Polish Neuromuscular Diseases Association and member of the EPF Ethics Board, about his experience as a patient representative on the EMA’s Pharmacovigilance Risk Assessment Committee (PRAC).Michal reflects on the responsibility and impact of bringing the patient perspective to medicines safety discussions, the importance of equal participation, and the case for voting rights for patient reps in EMA committees like CHMP.He shares lessons from over 30 years in patient advocacy and urges communities to connect and speak with a united voice.

In this episode, Anca Toma, EPF Executive Director at the moment of the recording, speaks with Dimitrios Athanasiou, board member of the World Duchenne Organization, former EPF Board Member, and long-time patient advocate, about the critical role of patients in shaping medicines regulation at the European level. Dimitrios shares his personal journey into advocacy, his work as a voting member of the EMA’s Paediatric Committee, and the real-world impact of involving patients in regulatory decision-making. He reflects on the challenges of ensuring meaningful participation, especially amid recent policy shifts that risk limiting patients’ voting rights within EMA committees.

We're continuing our miniseries about EDiHTA, a EU-funded project that aims to develop the first flexible, inclusive, and validated European Health Technology Assessment (HTA) framework for digital health technologies. In this episode, we spoke with Emma Andersson, an Advocacy Specialist actively involved in the project through the Patient Advisory Group. We discussed mobile health apps and their role in revolutionising healthcare.Find out more about the project: https://edihta-project.eu/

In this episode, we talk about the implementation of the EU Health Technology Assessment (HTA) Regulation. Join EPF in conversation with two special guests: Béla Dajka, Policy Officer at the European Commission (DG SANTE), and Valentina Strammiello, EPF Director of Strategic Initiatives. Together, they reflect on the journey to reach this moment, explore what the Regulation means for patients’ access to medicines and high-risk medical devices across Europe, and discuss how patient involvement will shape this groundbreaking initiative.

In this third episode of our special miniseries on patient involvement at the European Medicines Agency (EMA), EPF Executive Director Anca Toma speaks with Jakub Dvořáček, Deputy Minister of Health of Czechia. In this conversation, they dive into how patients can engage at the national level to help shape health policies. They also explore how this national involvement connects with and complements patient involvement at the European level, including in EMA decision-making.

In this second episode of our special miniseries on patient involvement at the European Medicines Agency (EMA), EPF Executive Director Anca Toma speaks with MEP Stine Bosse (Renew Europe Group, Denmark). They explore how patient voices, namely their perspectives and contributions, are essential in shaping EU health policies.This episode was recorded in May 2025.

In this first episode of our special miniseries on patient involvement at the European Medicines Agency (EMA), EPF Executive Director Anca Toma speaks with Juan García Burgos, Head of Public and Stakeholders Engagement Department at the EMA. In this episode, they explore how patient voices are shaping medicine evaluation and healthcare innovation in Europe. From navigating conflicts of interest to building trust through transparency and training, this conversation highlights why patient engagement is an ethical imperative.