Exploring the benefits of health data sharing for patients, healthcare systems, and medical research at the EU level
15 May 2025 | European Parliament, Brussels (Belgium)
📅 Date: 15 May 2025
📍 Location: Room A3H1 | European Parliament, Brussels
🎟 Register here now and be part of the conversation! (free but mandatory)
Please note that registrations will be accepted on a first-come, first-served basis. If the maximum capacity is reached, registrations might be closed at any time. Thank you for your understanding.
Join Us for European Patients’ Rights Day 2025!
Health data sharing is transforming healthcare, yet many people remain unaware of how their data can contribute to public health. The rapid evolution of digital technologies and artificial intelligence has opened new possibilities—but also challenges—in using health data ethically and effectively.
This year’s European Patients’ Rights Day 2025 will focus on the crucial role of health data sharing in improving healthcare outcomes while ensuring transparency, security, and patient empowerment.
Key Topics
- The Role of the European Health Data Space (EHDS): How it is shaping the future of health data management in the EU.
- The Benefits of data sharing: How sharing and returning health data to patients fosters transparency, patient empowerment, and better healthcare decision-making.
- Real-world initiatives: Case studies from EU-funded projects demonstrating the value of ethical and patient-centered data sharing.
- Security and privacy: Ensuring strong protections and clear consent processes to build
AGENDA
Moderator: Mariam Zaidi, journalist
14:30 – 15:00 Opening remarks
- MEP Brando Benifei, S&D Group, Italy; Co-Chair of the MEPs Interest Group “European Patients’ Rights & Cross-Border Healthcare”
- Mariano Votta, Responsible for EU Affairs – Cittadinanzattiva APS-Active Citizenship Network
- MEP Vytenis Povilas Andriukaitis, S&D Group, Lithuania
15:00 – 15:15 The Role of the European Health Data Space
- Fulvia Raffaelli,Head of Unit C1 Digital Health, DG SANTE, European Commission
- MEP Tomislav Sokol, EPPGroup, Croatia; Co-Chair of the MEPs Interest Group “European Patients’ Rights & Cross-Border Healthcare”
15:15 – 16:15 Multi-stakeholder roundtable: benefits of sharing and returning health data to patients (including Q&A)
- Johanna Blom, Professor of Psychobiology Pediatric & Behavioral Neuroscience – University of Modena, and IHI FACILITATE Coordinator
- Birgit Bauer, Digital Health and Social Media Expert, Patient Expert, and Coordinator of Data Saves Lives Germany
- Aneta Tyszkiewicz, Director Digital and Data – European Federation of Pharmaceutical Industries and Associations (EFPIA)
- Marko Korenjak,President – European Liver Patients’ Association (ELPA)
- Sara Farina, Resident in Hygiene, Preventive Medicine, and Public Health- Università Cattolica del Sacro Cuore, PROPHET Project team
16:15 – 16:30 Final remarks
- Jakub Adamski, Head of the Co-operation Department, The Office of the Commissioner for Patient’s Rights
Read more here
For more information, write to brussels@activecitizenship.net
