European citizens move more and more across the Union, and the need for cross-border care is increasing. In 2020, there were thus 13.5 million Europeans living in another EU country.
The European Health Data Area will play a decisive role in improving the medical treatment of patients when they are in another Member State, thanks to the exchange of health information under security and interoperability conditions. Two cross-border infrastructures are at the core of this ecosystem: MyHealth@EU, which is already in place, and HealthData@EU.
Medical records translated into the language of the healthcare staff
In Brussels, Licínio Kustra Mano, who is responsible for information systems in the Directorate-General for Health and Food Safety of the European Commission, explains to us what these infrastructures will change for health systems and patients.
“MyHealth@EU allows healthcare professionals to access information from another country: for example, a pharmacist will have to get prescriptions written elsewhere.” he says before adding: “A doctor in the hospital must have access to essential information about their patient’s allergies, vaccinations, previous illnesses or current treatments.”
Medical records are translated into the language of the healthcare staff. This allows European citizens traveling in the Union to receive care as if they were in their own country.
Within the framework of MyHealth@EU, data are available through national contact points, which will gradually be established in all Member States, and European coordination services, which harmonize the exchange of information between countries.
A highly regulated secondary use
HealthData@EU, for its part, allows the so-called “secondary” use of this huge catalog of information in research, innovation or even policy-making.
Researchers, institutions or companies must request authorization from a dedicated body set up in each Member State. Access will be in complete confidentiality and security and each of the countries will maintain hosting of their own data.
“There is no centralized European database that collects all patient data,” insists Licínio Kustra Mano. “The information remains where it was collected and is accessed when needed.” he adds.
MyHealth@EU services such as electronic prescriptions and patient records are already available in ten European countries. They will soon be extended to cover the entire Union. Eventually, other types of data will also be available across the EU: medical images, laboratory results and hospital discharge reports, and eventually the entire medical record.
Patient identification is impossible
A pilot version of this second infrastructure, HealthData@EU, will be launched within two years to test on a small scale the challenges that arise in accessing health data.
In Paris, the Health Data Hub leads the consortium that will manage the pilot project. This French public agency already makes health information available according to high standards of security and confidentiality. “No employee of the Health Data Hub at any time has access to directly identifying data: this is a rule of the hub,” explains Emmanuel Bacry, scientific director of the Health Data Hub. “The data is encrypted, the encryption keys and the entire encryption system are 100% owned by the hub, we have an extremely high level of security: which is quite normal for data that is so sensitive.” he points out.
The Finnish authority Findata is also part of the consortium. She brings her experience in managing the secondary use of health data in connection with projects of public interest.
“We never issue what are called direct identifiers, meaning name, social security number, variables that directly identify people,” says Johanna Seppänen, its director. “The data is always pseudonymised, i.e. they do not contain information that can identify the person; they can even be anonymized, i.e. they are presented in a form that does not allow identification.” she assures.
In such a technological ecosystem, security and data protection will play a crucial role in gaining citizens’ trust and their acceptance of sharing information about their health.