Access to personal health data is increasingly recognised as a cornerstone of patient empowerment, improved healthcare outcomes, and a thriving data economy. Yet the reality of access varies widely across the globe - shaped by 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 forthcoming European Health Data Space regulation. By highlighting best practices, policy enablers, technology standards, and common barriers, from fragmented IT systems to misaligned incentives, the session will bring together technical, legal, and human perspectives for a lively, solution-oriented discussion.

Presentations in this session:

• Presentation by Mikael Rinnetmäki, HL7

Mikael will set the scene for the discussion by framing the global context of patient access to health data. He will reflect on how different countries and regions approach access, the cultural and systemic factors that shape these differences, and why access is fundamental not only for empowerment and better healthcare but also for enabling a fair and functional data economy. His introduction will connect high-level principles with the concrete challenges and opportunities ahead.

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

Data for Care, a project led by Data For Good Foundation (DfG), is part of CRANE (an EU PCP-project) and is now in its pilot-implementation phase. Together with international partners, it delivers an ecosystem and a platform where citizens can safely control and share their personal data, both for self-empowerment and to support health professionals as well as evidence-based health policy decisions and research.

• Presentation by Karolina Mackiewicz, Global Health Connector, xShare project

The xShare Yellow Button makes health data portability real: with one click, people can share their data in the European Electronic Health Record Exchange Format (EEHRxF) across portals and apps. By turning access into empowerment, xShare helps individuals benefit from better care while fuelling innovation in the European Health Data Space (EHDS). The presentation will highlight how the MyData community can engage with xShare initiative through open calls for early adopters, the Community of Excellence, and the EEHRxF Standards and Policy Hub.

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