Elaine Murray
Public Affairs Lead, EIT Health Ireland-UK
First introduced by the European Commission in 2022, the European Health Data Space (EHDS) is a data-sharing infrastructure framework designed to put power back into patients’ hands.
The legislation is two-fold. Firstly, every patient and citizen in Europe will have access to, and control over, their own digital health information, including when they travel in Europe. The second part of the EHDS will enable large anonymised datasets to be made available for research, innovation and policymaking.
European Health Data Space implementation
A lengthy legislative process at EU level has now passed, and implementation of the EHDS can begin across Europe. Ireland has until 2030 to introduce an Electronic Health Record (EHR) system nationwide to comply with the framework.
In the short term, data collected under the EHDS will enable faster and more effective development of new drugs and medical technologies, such as AI tools to assist diagnosis. Clinicians will have access to more comprehensive information about a patient’s medical history to prescribe targeted personalised treatments. Patients will be empowered to take control of their health by making data-driven choices.
Enabling a proactive approach
In the long term, we could see a shift from treatment to prediction and prevention. A national EHR is just the start. Under the EHDS, there are 17 different categories for electronic data to enable research, including genomic data.
The establishment of the Genome of Ireland project was recently announced where the genomic dataset of approximately 1,200 people living in Ireland will be captured. This contributes to the wider Genome of Europe initiative, which 500,000 European citizens are set to get involved in. The EHDS will be a key enabler to this pan-European project.
In the long term, we could
see a shift from treatment to
prediction and prevention.
Data-sharing and fostering trust
Research conducted by EIT Health found that patients are generally in favour of sharing their anonymised data, if used securely, with aspirations of helping others. Access to a multitude of diverse datasets, like never before, can accelerate research into life-saving treatments for rare diseases and advance disease prediction, identifying individuals who may be predisposed to certain risk factors.
As EHDS implementation begins, public engagement will be important to build trust and communicate why we need a health data-sharing framework. Actions could include:
- Largescale health and digital literacy campaigns
- Patient advocates communicating the EHDS
- Patient decision-making roles on EHDS governing boards
Interacting with healthcare more efficiently
The EHDS affords us a clear path forward and timeline for implementation of an EHR. This isn’t just another regulation; it’s an opportunity to transform how we interact with healthcare and share learnings with others in Europe on the journey to digitisation.
