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

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Fellow - Healthcare

The European Commission has just presented a series of recommendations for the creation of a secure system that will enable citizens to access their electronic health records in all Member States of the European Union by 2021. The aim is to facilitate European citizens' access to their health data wherever they are in the EU, to improve medical monitoring and to make emergency care more efficient. Laure Millet, policy officer – healthcare policy at Institut Montaigne, presents the challenges of such a system.

European countries are more or less advanced in terms of electronic medical records

In France, the Shared Medical Records (SMR – Dossier Medical Partagé in French) was officially launched in November 2018. According to the Health Insurance website, it is an electronic health record that stores, centralizes and secures all patient health information (reimbursements, pathologies, treatments, consultation and hospitalization reports, examination results, etc.). The idea of the SMR is not new: it was launched in 2004 for a potential implementation in 2007 but was subsequently abandoned. After some delay, France seems to be catching up; in April 2019, five million French people created their SMR. What about other EU countries?

The northern European countries are well advanced in this field: Finland, Sweden, Denmark and Estonia are pioneers in the digitization of their administrations. Online services, connected identity card, nearly all citizens now use the Internet for their administrative procedures. The same applies to health services. For example, an Estonian who goes to the hospital only presents their identity card, on which all their information is stored (including his social security card). It allows the doctor to quickly access their patients' medical records since all the data is centralized there.

The Shared Medical Records is an electronic health record that stores, centralizes and secures all patient health information.

In Denmark, the Medcom initiative was launched in 1994 as a national health data network, with an Internet portal that collects and distributes medical data between health professionals and citizens. Thus, since 2004, each Danish has an online medical file containing all their prescriptions. The objective is that each health professional can have access to the patient's complete medical history, which saves a significant amount of time in the care process. 95% of doctors use it.

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.

Finland and Estonia, whose respective citizens travel a lot between the two countries, have decided to share their health files in electronic form (e-files), since without such a system, a Finnish moving to Estonia (or vice versa) could see their medical data lost. This project is called eHealth Digital Service Infrastructure (eHDSI) and would gain from developing in a similar way across the European Union.

To establish this European system, all data must be harmonised and gathered in a single database.

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.