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Future of Healthcare Q1 2024

EHDS framework: how patient access to health data can improve outcomes

Molecules or DNA strand, genetic engineering, neural network, innovation technology, scientific research
Molecules or DNA strand, genetic engineering, neural network, innovation technology, scientific research
iStock / Getty Images Plus / bestbrk

Ciara Finlay

Medtech and Engineering Senior Executive, Irish MedTech Association, IBEC

Health is set to be the first common data space introduced and will allow for the movement of electronic health information within the European Union (EU).


The European Commission published the European Strategy for Data as part of Europe’s Digital Decade policy programme in 2020. “The European Health Data Space (EHDS) is a fundamental game-changer for the digital transformation of healthcare in the EU,” according to Stella Kyriakides, Commissioner for Health and Food Safety.

EHDS empowering EU health data

EHDS seeks to address key challenges facing healthcare systems in Europe resulting from a lack of access to health data and is designed to boost Europe’s competitiveness on the global stage.

If passed, individuals will have access to, and control over, their digital health data from anywhere within the EU. It will also make large, anonymised datasets available for research, innovation and policymaking.

Readiness and pan-European assessment

Although the benefits of the EHDS could be far-reaching, major obstacles exist because each country is at a different stage of digital health record availability.

In 2023, a pan-European steering committee — coordinated by EIT Health and chaired by Dr Andrzej Rys, Principal Scientific Advisor at DG SANTE, European Commission — was established to assess member states’ readiness for implementation of the EHDS.

As part of this, Irish Medtech and EIT Health Ireland-UK brought together key stakeholder groups on the 30th of May for a special roundtable on how prepared Ireland is and how to realise the benefits.

Although the benefits of the EHDS could be
far-reaching, major obstacles exist because
each country is at a different stage of
digital health record availability.

Health information policy changes

Irish Medtech collaborated with EIT Health Ireland-UK on a white paper, which was launched in the European Parliament Offices in Dublin at the end of 2023. The high-level recommendations to support effective implementation in Ireland are:

  • Governance: with clear definitions and harmonisation in the EU
  • Capacity and skills: with new training to upskill in areas, such as data and cybersecurity
  • Resources and funding: with a national strategy to support both private and public actors involved
  • Data quality: with harmonised data standards and clear data collection guidelines
  • The secondary use of data: with better-shared data to support clinical research and device approval
  • Fostering data use in healthcare: with empowered patients and digital literacy measures

In Ireland, health information policies are already undergoing rapid changes, with the Health Information Bill leading to the creation of both summary care and shared care records and the establishment of a National Health Information Authority. Such proactive approaches are expected to pay dividends as we prepare for change in Europe.

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