XXL balloons, staff at each doorway and a few bottles of champagne, whose “pop” resonated until late at night. This Thursday, February 29, the Ministry of Health celebrated with great fanfare the two years of “My health space”, this online health record which allows health documents to be stored and shared. There is reason to toast: after a difficult gestation, the latest in the digitalization of public services is finally attracting the French.
Gathered at the Maison de la Chimie, near the National Assembly, the approximately 300 guests present that evening were able to appreciate the success of the project. 11 million French people have activated the tool since its birth in 2022, after Ségur de la Santé. 220 million prescriptions, medical analyzes and reports were submitted there in 2023, or half of the health literature produced in the year. An “excellent use of digital technology”, welcomed the Minister of Labor and Health, Catherine Vautrin.
The Minister of Health Catherine Vautrin was the guest of honor for the two years of “My health space”
© / Anthony Beau
In front of the small hands of Health Insurance and a few hand-picked doctors and industrialists, the guest of honor, who arrived on duty after the battle, also praised the hard work of the teams in charge of the project. The initiative had indeed aroused significant resistance, even within the institutions themselves. “At the start of the adventure, we had more of a belief than anything else,” confided Olivier Clatz, the project leader, a former entrepreneur in medical artificial intelligence.
Fifteen years of failures
Because, it must be remembered, until now, all attempts to digitize the health record had failed and France had fallen significantly behind other Western countries. The old version of the platform, the “Shared Medical File”, even had to be abandoned due to lack of use. If the improvements in ergonomics have greatly helped the “baby” to grow, it is above all the method used to attract users which is now bearing fruit.
Indeed, to avoid the “empty shell” syndrome, the government has opted for account opening by default. A radical strategy, the opposite of the usual standards regarding personal data. “Faced with previous failures, we understood that if we wanted it to work, we had to change the paradigm and consider the platform as a public service in its own right, therefore, in fact, universal,” explains Hela Ghariani, ministerial delegate for digital in health.
Rather than encouraging users to register, patients must conversely indicate if they do not want the tool, or restrict access to it. As a result, no less than 58 million French people have an open profile, but have never connected to it. How many of them are unaware that their doctors continually update their health space and whether or not they themselves have already been there? On the sidelines of the hugs, the tour de force embarrasses: “There is something to qualify the success that we are told,” slips Agnès Giannotti, president of MG France, the main union of general practitioners.
A radical strategy
According to the ministry, the technique should make it possible to avoid two-tier medicine. Otherwise there would be a risk of there being, on the one hand, certain patients for whom we could consult the medical history in a few seconds, and others who would have to come with their paperwork under their arm, to each appointment. Because, with My health space, the issue is not only administrative simplification: the platform must also facilitate care and, ultimately, help with diagnosis by providing useful information to doctors.
However, this method poses significant confidentiality problems. Users who have not activated their account authorize by default, and often without even knowing it, any practitioner to be able to consult their file. The risk: that malicious caregivers misuse the information it contains, in the context of personal conflicts for example. This is not a fantasy: during the health crisis, doctors had indeed taken advantage of their access to digital tools to find out if Emmanuel Macron was vaccinated.
To avoid these situations, a notification is immediately sent to the insured, by post or by e-mail, when their file is consulted, specifies the ministry. But these notifications are by definition sent after the fact, once the information it contains has been read… “So far, no complaints have been recorded, patients rather thank us when they discover that the tool helped with their care,” defends Hela Ghariani.
French people can also restrict access to My health space, block a practitioner or modulate access to their documents one by one. If their digital notebook contains information that they consider sensitive or that they do not want to share widely, such as their state of mental health, an abortion, or any other pathology, they therefore have every interest in connecting, to sort between the data that he wishes to keep strictly confidential, and those that would be accessible to all doctors. But if this configuration is possible, you still need to know it and implement it.
Fragile safeguards
These safeguards would be sufficient to dissuade overly curious practitioners, we assure the House of Chemistry. “The culprits would also be exposed to criminal and ethical proceedings”, indicates Pierre de Bremond d’Ars, president of the No Fake Med collective of doctors, general practitioner, and member of one of the working groups responsible for reporting the observations related to the use of the platform. Access to data is also restricted for pharmacists or physiotherapists, who do not necessarily need to compile patients’ medical histories.
The ministry assures that the CNIL approved these accesses by default, whereas consent is usually never given a priori. “It is a derogatory principle provided for by the public health code and compensated by the rule of professional secrecy. If secrecy is violated, there will be sanctions,” explains Hela Ghariani. However, this ease of access raises questions: with My health space, insurance doctors who also have a private activity could, for example, find out about the health habits of their policyholders.
On the platform’s anniversary, it was not time for self-criticism, but for high hopes. Excited by the assessment of the “baby”, designed before its arrival, the Minister of Health indicated that she wanted to “go further”, and cross, for example, the different databases of doctors, to follow as closely as possible demand for certain medications. What better way to fight against the shortages which have followed one another in recent years, or to power medical algorithms.
In front of a full amphitheater, the developers of My health space also shared a dream with their audience: that the initiative, which was once considered impossible, inspires other ministries. Because otherwise, we explain to the applause of a room conquered in advance, all this data, which the digital age irremediably creates, will end up in the hands of the Tech giants. However, as we know, no one reads the general conditions of use of these tools either.