More than 50 clinicians, data scientists, digital health innovators and industry leaders gathered in Barcelona to participate in an international hackathon to develop a financially sustainable model to support federated data sharing between European children’s hospitals.
The urgent need for cross-border data sharing in paediatrics
Strict regulations exist to prevent or limit how data can be shared between organizations and countries. These regulations are necessary for patient privacy but can have knock-on effects for research and development of new treatments.
Where patient population numbers are small, like in paediatrics or rare diseases, researchers and regulators often lack sufficient data to advance care. This means that patients and families might not get the care they need or benefit from new technologies. And without comparative data, health systems might not be making the best use of scarce healthcare resources.
The solution: The Paediatric Health Data Space
Funded by Horizon Europe and UKRI, the PHEMS project is building a Paediatric Health Data Space (PHDS) to address the data needs in paediatrics. The PHDS will allow participating hospitals to share data in a federated network while maintaining full control over their data and preserving patient privacy. Federated data sharing means organisations can learn from each other’s data without actually moving or pooling the data itself, by securely analyzing it where it already sits and only sharing the results. But operating a system like this requires resources to keep it going.
The PHEMS Business Hackathon: Creating long-term sustainability to meet paediatric health data needs
Bringing together experts from hospitals, research organizations, the pharmaceutical industry and innovation ecosystems, the PHEMS Business Hackathon was a collaborative forum to explore exploitation models and long-term sustainability strategies for the PHDS. Through interactive workshops, participants co-created a range of models to help sustain paediatric data sharing in Europe. The Hackathon also reinforced a growing Europe‑wide commitment to unlocking the potential of paediatric health data.
Pekka Kahri, the PHEMS project coordinator said:
“The hackathon validated that there is both demand and willingness to pay for analytical studies, scientific research, clinical trials, and innovation in paediatrics. This is a major landmark in our journey towards a sustainable economic model for PHDS.”
A full analysis of the hackathon results will be published in June 2026.
