European System for Data Exchange: What Are the Challenges for Healthcare?

Sweden adopted a national e-health strategy in 2006. The Swedish Medical Record (NPÖ) is accessible to authorised personnel, and any existing computer system can be connected to it.

In southern Europe, in Spain, the Andalusian region has launched the Diraya program, which aims at ensuring the continuity of care by harmonizing information so that it is accessible to everyone, patients and doctors alike. A single medical file has been set up and the information is centralized on specialized websites. More than 90% of the Andalusian population is covered by this scheme which has saved several million euros.

Easier access to care for European patients, wherever they are

A European system of health data exchange would have many advantages; it would make it easier for European citizens to move from one country to another without having to worry about their current medical prescriptions or treatments. In addition, in the context of emergency care abroad, the patient file would be accessible more quickly. Hence, they will be treated more quickly and securely, and with the appropriate care.

Currently, the European Health Insurance Card does not grant access to a person's medical file. It solely provides a reimbursement in the event of unforeseen treatment provided in the European Union. In addition, it is only valid for two years. This is impractical for citizens wishing to move abroad for a long period of time, or those travelling regularly or for patients with chronic diseases, who require regular follow-up, even when they are abroad.

However, to establish this European system, all data must be harmonised and gathered in a single database. It is the case in France at the national level, because our health system is centralized and patient data is collected by a single agent, the Assurance Maladie, but this is not the case for all our European neighbours. For example, in Germany, it is not mandatory to subscribe to the public health insurance system; citizens can choose to subscribe to a private insurance system. In addition, medical records differ from one Länder to another. Therefore, the data are neither grouped in the same way nor centralised.

The challenge of confidentiality of health data

If a European medical data system were to see the light of day, it would have to be in full compliance with the General Data Protection Regulation (GDPS) which entered into force on 25 May 2018, protecting personal data while strengthening and unifying data protection for individuals within the European Union.

In the majority of countries that have introduced Shared Medical Records, the patient can choose who can or cannot access their data, which therefore remain protected. In addition, access and actions performed on the SMR are tracked, allowing the patient to verify who has accessed their file. If a health professional violates these rules, they would be sanctioned by the GDPS (financial sanctions or even criminal proceedings).

The European framework for health data exchange could therefore be based on the rules put in place in France, in order to protect data collected via electronic health records. The patient's medical data must remain confidential, in accordance with medical confidentiality, but they could be shared, in anonymity, between European hospitals for research purposes: indeed, with more data, professionals will be able to compare their practices and develop new innovations.

This system could lead to a "single market" for health data in Europe, which would benefit patients in terms of medical and therapeutic advances. To this end, a Europe-wide campaign to raise awareness is needed, as proposed by Institut Montaigne for the national SMR in 2010 in its study entitled Réussir le DMP, so that citizens are informed, and this system can be extended.

Finally, as also recommended by Institut Montaigne in the above-mentioned study, it seems necessary to provide financial incentives for European stakeholders to take part in this data exchange, through higher reimbursement rates for doctors or lower supplementary insurance contributions for patients.