Ireland’s Progress in the European Health Data Space: Legislation, Private Sector Engagement, and Opportunities to Shape Implementation

As the Irish healthcare system continues its efforts in digital transformation, the European Health Data Space (EHDS) is a critical initiative poised to shape the future of health data access and exchange across the continent. During the recently held 21^st National Health Summit, healthcare and industry experts joined a panel discussion on ‘The European Health Data Space (EHDS) and what it means for Ireland’s healthcare’.  

As part of the panel, Elaine Murray, Public Affairs Lead at EIT Health Ireland-UK, shared key insights into Ireland’s progress, the role of the private sector, and set out opportunities for stakeholders to contribute to the EHDS framework.

Building the Legislative Foundation 

Elaine highlighted the significant legislative efforts taking place in Ireland to align with EHDS objectives. The EHDS envisions that every citizen will have access to and control over their own health information, which would be a key enabler for both patients and clinicians. 

“To support this vision, Ireland’s Department of Health put forward the Health Information Bill in 2023, andintroduced ‘Digital for Care: A Digital Health Framework for Ireland 2024 – 2030.’ The HSE also published the ‘Digital Health Strategic Implementation Roadmap’ last year. Additionally, in December 2023, the European Commission awarded a direct grant of €3.6 million to support the establishment of Ireland’s future Health Data Access Body.” 

What Role can Private Sector Companies Play in the EHDS? 

Beyond public sector initiatives, the private sector has a dual role to play in the EHDS, with many acting as both data holders and data users. 

“Private sector companies that collect health data will be classified as data holders under the EHDS, requiring them to interact with the national Health Data Access Body. However, they also stand to benefit as data users, gaining access to large anonymised datasets from across Europe to support research, innovation, and product development,” Elaine explained. 

This presents a unique opportunity for private healthtech companies to engage with the EHDS framework, ensuring compliance while leveraging new data-driven insights to enhance healthcare solutions. 

Shape the EHDS: Open Public Consultations 

Elaine went on to emphasise the importance of stakeholder engagement in shaping the EHDS, pointing out current openpublic consultations led by the second Joint Action Towards the European Health Data Space (TEHDAS2). 

“There is a tangible opportunity for stakeholders to influence how the EHDS is implemented. TEHDAS2 joint action has launched four open public consultations that are accepting feedback until 28th February,” she noted. 

The draft documents open for feedback focus on: 

• Draft guideline for data holders on data description.
• Draft technical specification for a national metadata catalogue.
• Draft guideline for data users on good application practice for data access and data requests.
• Draft guideline for data users on how to use data in a secure processing environment.

Looking Ahead 

Ireland is making notable progress in preparing for the EHDS, but there is still work to be done. With continued strong legislative backing and increased private sector participation and engagement, the country can be ready to integrate into this pan-European health data ecosystem. 

Find out more about the EHDS in EIT Health Ireland-UK’s report ‘Implementing the European Health Data Space in Ireland’ from November 2023.  

As sponsors of the event, EIT Health hosted an exhibitor booth providing the local team with the opportunity to engage with industry professionals on interesting and diverse healthcare topics. Join the EIT Health team on 4-5 March in Brussels at the Driving Innovation in Health Data and Digital Health event and gain insights into key European initiatives like the EHDS and AI Act. Register here.