Presentations in this session:

• Presentation by Annemette Broch, Founder, DATA for GOOD foundation

Data for Care, a project by the Data For Good Platform (DfG), is part of CRANE (an EU PPC-project) and in its implementation phase, where it together with international partners, deliver an ecosystem and a platform where personal data can be shared by citizens and used safely for self empowerment and informed health policy decisions.

• Presentation by Mikael Rinnetmäki, HL7

Patient Access to Health Data. Access to personal health data is increasingly recognized as a cornerstone of patient empowerment, better healthcare outcomes, and a thriving data economy. Yet across the globe, the reality of patient access to health information varies widely—shaped by differing regulatory environments, technological maturity, cultural norms, and healthcare infrastructures. This session explores the evolving landscape of patient access to health data across key regions including the US, the Nordic countries, and the EU with the upcoming European Health Data Space regulation. The session will highlight best practices, policy enablers, technology standards, and common barriers—from fragmented IT systems to misaligned incentives. Join us for a lively and solution-oriented discussion that bridges technical, legal, and human perspectives—and helps shape a more just and functional data future in healthcare.

This session is hosted by Pernille Tranberg, Co-Founder, dataethics.eu