In late April Professor Andrew Morris, Director of Health Data Research UK (HDR UK), and Tim Hubbard, Director of ELIXIR, joined Understanding Patient Data to open our two-part EHDS Unpacked webinar series – Part One: What Europe’s health data future means for the UK. Below they share their top takeaways from the keynote.
Opening the door to Europe’s health data future
The European Health Data Space (EHDS) is a legally binding framework that aims to transform how health data is used across the European Union (EU). The initiative covers the populations of 27 EU member states – around 449 million people – creating a data ecosystem far larger than any single national system. Its ambition is simple – to enable trustworthy, interoperable use of health data to improve care, accelerate research and strengthen the EU’s health innovation ecosystem.
The EHDS matters beyond the EU too. Many of the biggest health challenges we face today, such as pandemics and rare diseases, are simply too large and too complex for any single nation to solve alone. If the EHDS is successful, today’s research can become tomorrow’s care, delivered faster and more equitably.
Connecting the UK to a federated Europe
From 2027, EU member states will begin implementation of a common legal, technical and governance framework covering both primary use of data (for patient care) and secondary use (for research, innovation, regulation and public health). The model is federated, with each country operating its own health data access body or bodies (HDAB), connected through shared standards and governance. We often describe this as a “power grid” for health data – locally controlled but internationally connected.
While the UK cannot formally join EHDS governance in the near term, we have a huge opportunity to remain influential. The UK has genuine strengths – leadership in trusted research environments, privacy enhancing technologies, strong public and patient engagement practices, and world class experience in genomics and health data research.
However, of late, the UK has also faced challenges, as UK leadership in health research is weakening. From 2017 to 2023, foreign investment in life sciences fell 58%, phase III trial ranking dropped from fourth to eighth, and pharmaceutical research and development investment declined by nearly £100 million. NHS clinical trial recruitment halved, costing taxpayers an estimated £360 million in lost funding. The new Health Data Research Service (HDRS) provides an opportunity to bounce back from these challenges, as well as the subsequent potential to build directly on these assets, providing a national front door for secure, interoperable access to health data, alongside a willingness to engage across borders.
If shaped strategically, the HDRS could align closely with the federated access models at the heart of the EHDS and act as the UK’s primary point of connection with Europe – enabling collaboration, federation and influence even outside formal membership.
Interoperability as a system challenge
Interoperability sits at the centre of this opportunity, but it must be understood in the round. Success depends equally on shared semantics, alignment with clinical workflows, robust governance and, above all, trust. Other sectors, such as financial services, have demonstrated what becomes possible when standards, incentives and oversight are aligned at scale. For example, many of us are able to transfer money to friends and family almost immediately because most banks, although highly competitive, subscribe to the same messaging system called SWIFT, which ensures that rapid, secure communication of data. Health systems now have the chance to learn from this experience.
Genomics offers perhaps the clearest illustration of what this approach can unlock. Through federated data analysis infrastructures already being developed across Europe, it should become feasible to analyse data across hundreds of millions of health records and, over time, millions of genomes – without moving data or compromising privacy. For areas such as rare disease research and personalised medicine, this is genuinely transformative, combining scale with trustworthiness in ways that no single nation could achieve alone.
Our message is a pragmatic one. The EHDS will shape the environment around us whether or not we sit formally inside it. It is key that the UK strategically engages with the initiative – aligning standards, collaborating on pilots, shaping best practice and building trust at home. Done well, the UK can both benefit from, and help accelerate, the European Health Data Space.
Find out more about Understanding Patient Data's engagement with the European Health Data Space, and catch up on EHDS Unpacked Part One: What Europe’s health data future means for the UK.