DIGITALEUROPE’s Executive Council for Health warns more urgency is needed for EU health data sharing

DIGITALEUROPE’s Executive Council for Health is asking Member States to learn from its COVID-19 fighting efforts and to move with speed and urgency in developing European data sharing models.

During the COVID-19 pandemic, the EU demonstrated that speed is possible when the need arises to ensure faster data flows. Member States must now come together to keep the pace going forward.

COVID-19 and new variants remain a threat and will not respect national borders. The health crisis has shown that data flows are critical to combat the virus.

Member States must accelerate their cooperation in three key areas:

• Interoperable standards for consent to store and (re)use health data and health data formats to be used across all health systems in the EU.

• Leveraging funds, such as EU4Health and the Recovery & Resilience Facility (RRF), to create shared data platforms and ensure citizens and research institutions can access health information and services and share data.

• Working with data protection authorities to allow health data to be exchanged over borders. This requires greater collaboration across Member States towards a more harmonised approach in the implementation of privacy rules. Health data sharing will be vital for the development of life-saving innovations in software development, drug and vaccine discovery, and overall advancing resilient EU health systems.

Pan-European health data success stories

In order to fight the pandemic, the EU and Member States have accelerated their health cooperation and developed a range of effective digital solutions leveraging health data in record time. Below are three such examples where Member States have demonstrated successful cooperation in all the above points. 

• COVID-19 contact-tracing apps: The EU moved with speed and urgency to agree on a set of rules for the creation of digital contact-tracing solutions, with almost every Member State putting in place an app to ensure citizens and health authorities could trace the spread of the virus. Interoperability for the development of each app played an important role through a development toolkit based on principles such as privacy by design, purpose limitation, ID protection and voluntary uptake.

• COVID-19 digital certificates: All Member States – and several non-EU countries – have agreed on a pan-European digital certificate to allow citizens to display their testing or vaccination status and travel freely across borders, which works through a simple consent form for ID management. For it be effective, it required agreement on technical and interoperability standards. These standards allow each vaccination centre anywhere in the EU to log their records into mutually recognised national frameworks.

• eHealth Digital Service Infrastructure: Today, 7 Member States have joined the eHealth DSI, allowing for cross-border health data exchanges. This interoperable system allows patients to share their health summaries and ePrescriptions with healthcare providers outside their Member State. Despite the COVID-imposed travel restrictions, over 20,000 ePrescriptions have been dispensed and more than 600 patient summaries shared. Other Member States are expected to join these exchanges this year.

• In 2021, Member States have started working to enable the sharing of images, laboratory results and discharge letters through MyHealth@EU, first in the language of the patient and then in other EU languages. A pilot project will also look at the possibilities of providing patients with access to their own health data.