We have mountains of health data, but we turn only a fraction of it into better care. The European Health Data Space (EHDS) promises to change this equation – if we combine privacy protection with sensible sharing. Let’s see why it’s worth it and what obstacles need to be overcome.
Lots of data, little use
In healthcare, enormous volumes of information accumulate every day. Yet they often remain scattered across systems to which some have access and others don’t—and their actual use for patients, hospitals, or science is low. The result is that we make decisions more slowly and with less confidence than would be possible. Indeed, data are the fuel of change.
The pace of working with data in Europe is rising sharply. The value of the data economy rose from roughly 300 billion euros in 2018 and is expected to exceed 800 billion by 2025, while the share of professionals working with data is to grow from 50 to 65 percent. Ignoring this trend would be a mistake, especially in health, where accuracy and speed are decisive. Those who don’t catch the wave will be left behind.
What EHDS brings: securely shared data for better health
EHDS aims to change the rules of the game by creating a secure and interconnected environment for health data. It is built on patients’ rights to privacy and their involvement in deciding who will use their data and for what. At the same time, it supports the exchange of information across systems and countries and brings higher-quality, up-to-date data for research and innovation. Such a setup is the foundation of both trust and progress.
What does that mean in practice? Better healthcare thanks to a comprehensive view of the patient, faster research that works with current data, and more efficient hospital operations. Public health also grows stronger, because in crises timely and accurate data are decisive. And finally, a vibrant innovation ecosystem emerges, which naturally attracts investment into new medical technologies.
Risks and practical steps to success
A promising concept also has its downsides, which need to be discussed openly. Data fragmentation, over-interpretation of privacy rules (in our case often under the GDPR banner), technical demands and the time needed for preparation, patients’ willingness to share data, and finally aligning legislation—these are the main challenges. Each country will need its own pace and a realistic plan. Without them, the potential will not be unlocked.
The authors recommend five steps: harmonize formats, create a functional environment for secure storage and sharing, introduce technical standards, improve mechanisms and platforms, and implement solutions for data analysis. Plus one more: adopt the necessary legislative adjustments. The closing message is clear – embrace EHDS cautiously yet optimistically, collaborate and protect personal data in a way that doesn’t cripple the availability of information; be open yet secure.
