The aim of the EEDS regulation, for “European Health Data Space”, is to establish a common, secure and harmonised framework within the European Union (EU) for the use and exchange of health data, while giving citizens control over their health data. Although it came into force on 25 March this year, the text will not change the practical lives of citizens until 2029.
European patients will then be able to centralise their health data in a single space, digitise prescriptions and have prescriptions issued throughout Europe. A plus for frequent travellers and also for residents and cross-border commuters, whose healthcare pathways are increasingly cross-border. It's also a plus for healthcare professionals, who will be able to access all the relevant health data and better manage drug interactions, for example. Lastly, it is a plus for health authorities and researchers who, through access to anonymised data - known as secondary data in the jargon - will have data to facilitate health policies, research and innovation.
Provided, of course, that the file is properly populated. Last August, the e-Santé agency counted 220,000 records activated by patients. An effort in terms of communication will be deployed so that patients understand the interest of the system and use it more, says the Minister of Health, 
A new generation CSP
Meanwhile, it's time for the technocrats, who will have to ensure that the technical infrastructures are put in place at national level and can communicate with each other to form the essential building blocks of a European health platform. The first step is to digitise the patient pathway via the shared health record (DSP), which will be redesigned as a new-generation DSP (NG) that will centralise data from doctors' surgeries, pharmacies, laboratories, hospitals, vaccination records, care homes and social organisations. Data from medical apps is also potentially eligible for inclusion in this NG DSP. Martine Deprez insists that this centralisation will be voluntary, and that patients will be able to opt out at any time. Deadline: March 2029. The DSP NG will aim to be accessible throughout Europe.
Four working groups have been set up to deal with issues of interoperability (GP1), governance (GT2), certification and labelling (GT3) and secondary use - including the processing of anonymised data for research and health policy purposes - (GT4). These groups will work on sub-projects - there are currently 25 identified - under the supervision of the Ministry of Health and Social Security, which will set up a steering committee and an operational committee. All stakeholders will be invited to take part in the work, including the National Health Fund (CNS) and five other ministries.
From a governance point of view, various authorities must be set up under the regulation. One of these is a digital health authority. It will be this authority that will have to deal with the issue of data localisation.
This whole process will have a cost. In May 2023, the Bettel 2 government estimated the cost of the necessary computerisation of the healthcare system at €400m. The Frieden government has just increased this estimate to €500m.
