Date: May 2025 - Time: 14:30–16:30 CEST
Location: Room A3H1 | European Parliament, Brussels
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 focused 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 public trust in data use.
AGENDA and presentations:
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 Video Message
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, EPP Group, 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), Acting Director of the Public Agency of the Republic of Slovenia for Quality in Healthcare
- 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 Patients’ Rights
- Mariano Votta, Responsible for EU Affairs – Cittadinanzattiva APS-Active Citizenship Network
Read more here
To download the speakers' list, click here
To watch the photo gallery on Active Citizenship Network LinkedIn profile, click here
To read the press release, click here
To watch the full recording of the event, click here
To watch the official video summary of the Day with all the speakers click here
To watch the video interview to Johanna Blom on FACILITATE click here
Clippings, Interviews, Web & Press Articles:
HEALTH EUROPA (6th May 2025) Exploring the benefits of health data sharing for patients, healthcare systems and medical research at the EU level
TREND SANITÀ (14 May 2025): Sanità digitale e trasparenza: torna la Giornata europea dei diritti del paziente
For more information:
Under the patronage of:
And the Polish Commissioner for Patients' Rights, also known as the Patient Ombudsman, gave the honorary patronage to the event.
Endorsed by:
The MEPs Interest Group "European Patients' Rights & Cross-Border Healthcare.
Media Partners:
The initiative is realized in the framework of:
The FACILITATE project has received funding from the Innovative Medicines Initiative 2 Joint Undertaking (JU) under grant agreement No 101034366. The JU receives support from the European Union’s Horizon 2020 research and innovation programme and EFPIA.
With the unconditional support of:
