19th European Patients’ Rights Day

On European Patients’ Rights Day 2025, ELPA proudly joined a critical conversation on one of the most transformative issues in modern healthcare: health data sharing. Held under the theme “Health Data Sharing: Balancing Innovation, Transparency, and Trust”, this year’s event brought together policymakers, healthcare professionals, digital experts, and patient advocates to explore how health data can serve the public good when used ethically and responsibly. With the rapid advancement of digital tools and artificial intelligence, health data is now recognised as a powerful resource in shaping more effective, personalised, and inclusive care. However, many patients remain unaware of how their data is used or how it could be shared back with them to improve their own health management. During the event organised by Active Citizenship Network on May 15, 2025, speakers emphasised the importance of transparency, consent, and empowerment in building a trustworthy digital health environment. This was especially relevant for liver patients, who often navigate complex and chronic conditions where access to timely, personalised information is key. A central focus was the European Health Data Space (EHDS)—a significant initiative of the European Commission aimed at enabling the secure and ethical exchange of health data across EU countries. Speakers, including Fulvia Raffaelli (European Commission) and MEP Tomislav Sokol, highlighted how the EHDS is set to transform patient care, research, and innovation while reinforcing data privacy and security safeguards. Marko Korenjak, President of ELPA, represented the liver patient community in a multi-stakeholder roundtable discussing the benefits of returning health data to patients. He stressed that transparency and patient data access are not just technological issues, but fundamental rights. Sharing real-world insights from liver patients, Korenjak highlighted that empowered patients who understand and access their health data are more engaged, informed, and likely to experience better health outcomes. Other panellists presented EU-funded projects demonstrating ethical data-sharing practices, including the IHI FACILITATE and PROPHET projects. These case studies reinforced the message that ethical, patient-centred data sharing is not only possible—it’s already happening. However, participants agreed that we need stronger protections, simplified consent mechanisms, and increased patient awareness to scale these efforts. In his closing remarks, Jakub Adamski of the Office of the Commissioner for Patients’ Rights emphasised the need for sustained cooperation among all stakeholders—governments, health systems, industry, and patient groups—to ensure that the benefits of data sharing reach every patient. For ELPA, the event was a powerful reminder that the future of liver care—and healthcare more broadly—depends not just on digital innovation, but on building systems that patients can understand, trust, and actively participate in.