27/11/2025
Use of routinely collected health data is an invaluable resource for medical research, saving lives and livelihoods, yet only around 3 percent of the data we collect is ever used.
The European Health Data Space (EHDS) is a fantastically ambitious project to change this, joining up data sources for the benefit of individual patients, research and policy.
Chairing the panel discussion following the Federation of European Academies of Medicine (FEAM) Annual Key Lecture 2025 in Brussels - where I was representing the Academy of Medical Sciences - gave me a great opportunity to learn more, and reflect on the Liverpool’s Civic Health Innovation Labs (CHIL) and how .
The day opened with an excellent keynote by Prof Luis Marti-Bonmati on AI and Radiology. He showed how AI is already reshaping imaging, but also how far we still have to go on data quality, transparency and trust.
Our panel, “From Data to Care: Securing Trust in the European Health Data Space,” brought together four outstanding contributors:
• Katleen Janssens, Belgian Health Data Agency
• Timothy Yeung, CEPS (Centre for European Policy Studies)
• Sofia Peltola, Sitra (TEHDAS2 joint action and Value from Nordic Health projects)
• Katarina Vujović, OECD
My key takeaways were:
1. Governance and culture matter as much as technology.
Member States need clear decisions about responsibilities and access. The biggest barrier is often institutional reluctance to share data rather than the legislation itself.
2. Trust must be built deliberately.
If people do not trust how their data will be used, they opt out, and whole communities risk disappearing from the evidence base. Securely sharing anonymised data is a no-brainer for most people once they understand how it saves lives.
3. Transparency supports confidence.
Citizens are far more willing to allow secondary use when they understand what it means and how it is governed.
4. We need a genuine “data culture.”
Beyond compliance, we need a mindset that sees data as a strategic public asset that can improve care, research and innovation.
5. EHDS will succeed only if it can show real-world value.
Concrete examples that demonstrate how shared data leads to better diagnosis, faster discoveries and fairer health outcomes will be critical to the success of all health data projects..
Europe has a valuable opportunity to build a trusted, secure and genuinely useful health data ecosystem. It will be fascinating to see how this develops alongside similar initiatives such as Health Data Research UK (HDR UK) and NHS England Trusted Research Environments.
Whilst in Brussels, we also took the opportunity to meet colleagues at EFPIA - European Federation of Pharmaceutical Industries and Associations, Science Europe and the UK Mission to the European Union. We were comparing notes up on all things research, including our shared ambitions for FP10 Europe’s multi-annual funding programme for research and innovation.