Elaine Murray
Public Affairs Lead, EIT Health Ireland-UK
Sinead O’Connor
School of Medicine, Trinity College Dublin
People may soon be able to access their health data digitally from anywhere in the EU through the European Health Data Space proposal.
Imagine you suddenly get sick while travelling in Europe. You visit a doctor, and your medical history and medications are available at the click of a button. Under a proposal by the European Commission, this vision is set to become a reality in the next five years. The European Health Data Space (EHDS) is a legislative proposal currently moving through the European Parliament.
Remote access to digital health data
Under this proposal, individuals will have access to their digital health data from anywhere within the European Union. Additionally, anonymised data will be available for research, innovation and policy-making so that scientists and researchers can help prevent, diagnose and treat diseases — and improve healthcare delivery.
Why do we need the EHDS?
The intended benefits could be numerous:
- Access to personal health information places power in the hands of citizens. Through technologies such as sensors and mobile apps, they can monitor their own health and see how improvements in lifestyle impact health status.
- Healthcare professionals can use data for more prompt diagnoses and to improve wait times across the system.
- Secure exchange of health data across borders enables evidence-based research into diseases from diverse datasets, accelerating the pace of innovation into new treatments.
Investment in digital technologies will be required, as well as upskilling our healthcare workforce.
How quickly can the EHDS be implemented?
Although the benefits of the EHDS could be far-reaching, major obstacles exist. Each country is at a different stage of digital health record availability. Compare Estonia’s more-than-a-decade-old national Electronic Health Record with Ireland’s largely paper-based system.
For Ireland, a significant cultural change is required, transitioning from a focus on data protection to striking a balance between data protection and data sharing. Investment in digital technologies will be required, as well as upskilling our healthcare workforce.
Opportunity to modernise healthcare delivery
Despite anticipated challenges, this could be timely for Ireland. As we embark on our digitalisation journey, we can learn from European neighbours that are further ahead on health data standardisation and management.
Ireland — as a hub for MedTech and pharmaceutical companies with a highly educated workforce and renowned academic institutions — could become a leader in innovation utilising health data, such as artificial intelligence. Implementing the EHDS requires significant changes to healthcare delivery, so it is time to plan our response now. By playing our part, we can contribute to potentially life-saving health data for patients in Europe.