A major change is coming to how health data is governed across Europe. Through our EHDS Unpacked initiative, we are cutting through the complexity of the European Health Data Space, demystifying what it means for the UK, how it can create opportunities for UK-EU collaboration, and why it matters internationally

The European Health Data Space (EHDS)

The European Health Data Space (EHDS) is the European Union’s new framework for organising and using health data more safely, simply and consistently across EU countries. It is designed to strengthen individuals’ rights to access and control their own digital health information while establishing clear, harmonised rules that support responsible data use for healthcare, research, innovation and better policymaking. By improving how health data is shared and protected, the EHDS aims to empower citizens and enable more effective cross‑border care, as well as advance scientific and policy progress across the EU.

The EHDS is designed to help EU health systems work together more smoothly, and holds two main objectives:

  • Primary use – providing cross-border access to data for care and empowering EU citizens through initiatives like xShare which enable individuals to share their health data in one click of a button.
  • Secondary use – using data (safely) for research, planning and innovation with TEHDAS2 shaping the practical guidance for how health data can be used for research, innovation and public health across borders.

Even though the UK isn’t in the EU, this still matters. Standards set in Europe often shape global expectations – from how data is shared to what “good” looks like on transparency and trust. Equally, many of the structures it introduces are similar to those already in place in England, meaning UK organisations may have useful lessons to contribute as Member States develop their own systems.

Towards the European Health Data Space 2 (TEHDAS2)

TEHDAS2 (Towards the European Health Data Space 2) is a collaboration of 30 European countries working on the practical guidance for how health data can be used for research, innovation and public health in the EHDS.

A major part of TEHDAS2 is its public consultations, which test draft operational guidance with a wide range of contributors, including international partners. The third and final consultation is currently open for submissions, and will close on 30 June 2026. 

Find out more about TEHDAS2 here.

The UK cannot formally join the EHDS before 2035, but the choices being made now will shape the rules and expectations that third countries may later need to work within. TEHDAS2 is defining how collaboration, data linking, and citizen information will operate in practice – making this a critical moment for the UK to observe, learn and contribute.

Early engagement is not about negotiating access. It is about understanding how the system is taking shape, influencing emerging norms where appropriate, and ensuring future UK policy is grounded in real evidence, public expectations and practical experience. As the UK develops its own approaches – and a new Health Data Research Service alongside trusted research environments and debates on transparency and consent – there is real value in understanding where European approaches align or diverge.

TEHDAS2 focuses on:

  • harmonising access processes
  • reducing complexity between countries
  • creating clear rules for safe, trustworthy use of health data
  • shaping how non‑EU countries may collaborate in future

The current TEHDAS2 consultation runs from May – June 2026. It covers:

  • Collaboration between national health data access bodies
  • How third countries (like the UK) might request and use EU data
  • How datasets can be safely linked or enriched
  • A new “Citizen Information Point” explaining secondary uses in plain terms
  • How researchers should handle and communicate their findings

Find out more here.

EHDS Unpacked: A two-part webinar series

To cut through the complexity of the EHDS, Understanding Patient Data hosted EHDS Unpacked, a two‑part webinar series designed to make sense of this major change and explore what it means for the UK and internationally.

The first of these two sessions gave attendees a structured and accessible introduction to the EHDS. Delivered through an impressive line-up of UK experts, the session explored why the EHDS matters for the UK, and what new standards, expectations, and cross-border research requirements are emerging from Europe. The session shared real-world implications, from what it means for people, researchers and health systems in the UK, to how global shifts – including AI – make understanding the EHDS essential.

Catch up on EHDS Unpacked Part One: What Europe’s health data future means for the UK

The second EHDS Unpacked webinar shared real examples from countries transforming their use of health data and preparing for the EHDS. We explored what their experiences can teach the UK – from building public confidence to working across borders and managing practical and cultural challenges. International colleagues further outlined the steps they’re taking, the challenges they face, and what helps them progress, offering insights to support the UK and other non‑EU countries with long‑term planning.

Catch up on EHDS Unpacked Part Two: Global lessons for building a trusted health data space.

Find the full agendas from the webinars here.

Expert‑led perspectives on the European Health Data Space

Speakers from our EHDS Unpacked series have since shared thoughtful insights from their specialist areas. In the coming weeks, you’ll be able to explore clear, expert‑led perspectives on the European Health Data Space – and what it means for the UK and the wider international landscape – directly from those who understand it best.

Check back soon as we share more blogs from our expert speakers. 

In this blog, Professor Andrew Morris, Director of Health Data Research UK (HDR UK), and Tim Hubbard, Director of ELIXIR, share reflections from their keynote in Part One of EHDS Unpacked, highlighting what the EHDS could look like in practice, and why effective implementation is critical.

The blog outlines how the EHDS could help turn today’s research into tomorrow’s cross-border care, while strengthening patient trust. However, realising this potential will depend in part on the UK’s willingness to stay engaged and collaborate.

In this blog Dr. Petra Wilson, Managing Director of Health Connect Partners, reflects on her presentation from Part One of EHDS Unpacked, which traced the evolution of the EHDS.

Petra's blog reflects on how the EHDS grew from Europe’s fragmented health data landscape, shaped by earlier data initiatives and lessons from past court rulings, highlighting the need for better cross‑border sharing. She also emphasises that development of the EHDS requires balancing innovation, privacy, and trust through sustained collaboration, negotiation, and phased implementation.

Get involved

Understanding Patient Data is acting as an independent convenor, facilitating engagement and bringing together experts from across the UK health data space to help raise awareness and encourage participation in TEHDAS2 consultations over the coming months.

As part of this work, we’re keen to hear from people across health, research, policy and patient communities who want to share insights or highlight areas of interest as the EHDS develops. Your perspectives help ensure our work reflects real experiences and public expectations.

You can also stay connected by signing up for updates on our latest outputs, events and opportunities to contribute. Whether you’re looking to follow developments, offer expertise or participate more actively, we welcome your interest as we continue exploring what the EHDS means for people and the health system

Our funder

The EHDS is set to transform how health data is accessed and used across Europe, creating safer, simpler and more consistent standards for care, research and policymaking. Although the UK is no longer in the EU, these changes still matter.

Understanding Patient Data is incredibly grateful to Wellcome Trust’s funding, in helping UK organisations engage early with the EHDS. As Martin Smith, Head of Policy Lab at Wellcome Trust, shares below, understanding the EHDS is crucial for UK-EU health data collaboration.

"We’re excited to support UPD as they help UK stakeholders engage with the development of the European Health Data Space. Understanding and shaping EHDS now will create opportunities for UK-EU collaboration on health data, making research more efficient and impactful across the UK and Europe."

- Martin Smith, Head of Policy Lab, Wellcome Trust