Children’s hospitals hold extensive data on patients and care processes. When used effectively, these data can support benchmarking, improve efficiency, and enable research – particularly in rare and complex diseases.
However, because there are relatively few specialised paediatric hospitals across Europe, cross-border collaboration and secure data sharing are essential to generate the scale of evidence needed to improve care and advance research for children and young people.
The Data Working Group brings together ECHO members to maximise the value of health data through collaboration, knowledge exchange, and the development of common approaches to data governance, interoperability, and responsible data sharing.
The Data Working Group created the foundation for a broader European collaboration on paediatric health data, leading to the development of the PHEMS project.
Objectives
- Share approaches to data governance, organisation, and management
- Identify opportunities for joint projects, capacity building, and training.
- Influence and provide expert feedback on EU funding programmes and policy initiatives related to patient data and data sharing.
Leadership
Pekka Kahri, Technology Office, HUS (Helsinki and Uusimaa Healthcare District Hospital)
