EHDS Unpacked: Global Health Data Hackathon brings together insights from international experts on how the European Health Data Space (EHDS) can support global health data collaboration. Reflecting the strong enthusiasm for sharing experiences and learning across borders, the report explores practical steps to strengthen trust, interoperability, governance and cooperation, helping advance a more connected Global Health Data Space.
What we did
In May 2026, Understanding Patient Data collaborated with Prof. Dr. Henrique Martins to convene a Global Health Data Hackathon with generous support from Wellcome. The hackathon brought together experts from countries outside the European Union to explore how the EHDS could inform wider international collaboration. Using the EHDS as a shared reference point, participants examined how different countries approach the use of health data, and what would be needed to enable safer, fairer and more effective cross-border data use at a global scale.
The discussions focused on four connected areas: policy and governance, individual care and research use, technical infrastructure, and public awareness. Across all of these, the emphasis was on moving beyond high-level ambitions towards practical steps that could support real-world progress.
Key insights
A number of consistent themes emerged across the discussions.
Participants emphasised that while rules, standards and legislation are essential, they are not enough on their own. Progress depends on active governance, clear leadership and mechanisms for accountability that involve patients and the public, rather than treating trust as a by-product of compliance.
There was also a strong sense that countries are moving in broadly similar directions, but without a shared framework to align their efforts. A common vision – such as a Global Health Data Space – could help provide direction, enabling interoperability and collaboration while still respecting national differences.
At the same time, current processes for accessing health data are often too complex, slow and opaque. Improving these systems requires not only stronger safeguards but also clearer demonstrations of public benefit, so that patients and communities can see how data use leads to better outcomes. This is closely linked to trust, which participants recognised must be deliberately designed into systems through transparency, public engagement and continuous feedback.
Looking ahead
To maintain momentum and translate discussion into action, participants identified three practical next steps to support international collaboration, shared learning and progress towards the vision of of a Global Health Data Space:
- Set up a lightweight global exchange and learning platform: Establish regular virtual roundtables and a shared knowledge hub to enable countries to exchange health data policies, technical approaches and engagement practices, focusing on practical learning and rapid knowledge sharing.
- Launch focused, cross-domain working groups with clear outputs: Create small, action-oriented groups aligned to the four domains, producing tangible outputs while maintaining coordination across workstreams.
- Develop a living repository linked to a phased global roadmap: Build an evolving repository of good practice, evidence and case studies, supporting a practical roadmap towards a Global Health Data Space.
Global health data collaboration is not short of ideas; what is needed now is sustained coordination, shared accountability and visible demonstrations of value. Focusing on practical implementation through cross-border collaboration, interoperable systems and measurable outcomes will help turn ambition into action and realise the benefits of a more connected, trusted global health data ecosystem.
Acknowledgements
This work was developed by Understanding Patient Data in collaboration with Prof. Dr. Henrique Martins, with generous support from Wellcome Trust.
We are equally grateful to the international experts who joined us to for the hackathon with such enthusiasm and commitment to collaboration. We look forward to continuing our journey reflecting on national experiences, identifying shared priorities, and nurturing relationships to bring continued value.
Find out more
Understanding Patient Data’s EHDS Unpacked initiative has cut through the complexity of the European Health Data Space (EHDS), exploring its implications for the UK, opportunities for UK–EU collaboration, and its international significance.
Find out more about UPD's wider EHDS Unpacked series of work here.