Elaine Murray
Public Affairs Lead, EIT Health Ireland-UK
Effective data implementation in healthcare could bring early diagnoses and value-based care within reach, making precision medicine trends a reality and shifting focus from treatment to prevention.
As the new strategic agenda of the European Union’s (EU) main institutions places European competitiveness globally as a top priority for the next five-year term (2024–2029), legislative measures are already underway to fast-track data-driven research and innovation.
Unified approach to data
Back in 2020, the European Commission set out the European strategy for data, as part of Europe’s Digital Decade. It aims to create a single market for data that will ensure Europe’s global competitiveness. So far, specific regulations have been introduced as part of this ambitious strategy:
- The Data Governance Act 2020 aims to establish the processes and structures to facilitate data-sharing and make Europe a leader in the data economy.
- The Data Act 2023 sets out who can derive value from data and under which conditions.
Paving the way for cross-border accessibility to data
The value of data and the quality of insights for future healthcare research and innovation depend on ease of access and data availability. The European strategy for data sets out plans to establish 14 common European Data Spaces. Under this initiative, data from across all member states will be made available and exchanged securely in areas such as agriculture, mobility and skills.
European Health Data Space framework
Spurred by the significant lack of availability of quality health data to identify trends during the pandemic, health is on track to be the first data space implemented across the EU-27. The European Health Data Space (EHDS) is a common governance and infrastructure framework for the movement of electronic health information within the EU.
Under the vision of the EHDS, every citizen will have access to, and control over, their own digital health information. Large anonymised health datasets will be made available for research, innovation and policymaking purposes.
The legislative process for the EHDS is already in mature stages, with a draft text passed by the European Parliament back in March 2024. This landmark framework will impact every person accessing and delivering healthcare in Europe.
Preparing Ireland for the EHDS
In June 2024, the Minister for Health launched Digital for Care: A Digital Health Framework for Ireland 2024 – 2030 to guide digital transformation in health. In July, the Minister published the Health Information Bill 2024, which provides patients with greater access to their health information and establishes a legal basis for Digital Health Records.
To date, Ireland has secured €3.6 million in EU funding to develop secondary health data infrastructure. The wheels are in motion on the journey toward data-driven healthcare. Greater transparency and access to health data will transform research and innovation, shaping how we predict and prevent avoidable diseases.
