Hold-up on your health data! Will you react?
My dear fellow citizens, it seems that our leaders do not wish to take the necessary step of protecting our economic and social model, which for many years made France a country where life was good!
And, yes, I’m not afraid to say it: protecting our data, and in this case our health data, is a real battle that cannot be limited to the “knowers” or “experts”!
A very brief summary of the situation: following the launch of Cédric Villani’s plan to exploit our data for the benefit of the community, it was decided to embark on a major project designed to use massive amounts of data (Big Data) to propose advances in the medical field. To this end, a team has been commissioned to create a platform to collect our health data and make it available to third parties (start-ups, research institutes, etc.), with a view to improving medical knowledge and its environment, and proposing new advances in treatment and care.
This is a laudable goal, but the devil is always in the detail… Very quickly the team in place decided, without any real call for tenders, to choose the Microsoft azure platform to host our healthcare data, arguing that they were the only ones capable of carrying out this mission. This is factually false!
And don’t talk to me about specifications. In my professional experience, I’ve seen many decision-makers draft them in such a way that the candidate you want is in the best position, whatever the qualities of the opponent…
This pro-American tropism is also evident in the name chosen by the team: “Health Data Hub”, a very French name! A detail, you may say, and indeed, if the debate were confined to this kind of symbol, the point would be defensible.
What is the danger of having our data hosted by an American company, even if the data centers used are in France? The answer is simple: any American company is subject to the extraterritoriality of American law. In other words, an American company, regardless of its location, is subject to American law, and consequently so are the customers of those companies using their services.
Imagine if Microsoft decided to sell our data to banks or insurance companies. You would see your loan refused or granted at a prohibitive rate, or your insurance rates soar.
And let’s not forget the actions of the US government itself. During covid, massive data looting took place at certain healthcare providers. For the most part, these plunders went unnoticed, as American-made firewalls did not indicate any outgoing flows, but for those equipped with non-American hardware, it was a completely different story…
The vast majority of citizens agree on defending our agricultural sovereignty. What we’re talking about here is digital sovereignty, which, if we give up the fight, could have devastating effects. In addition to the above-mentioned risks, this means fewer jobs, lower tax revenues and, consequently, a loss of economic growth. We can partly explain Europe’s economic stall compared to the US. To buy only their solutions is to ensure their economic well-being, and the surest way to contribute to our impoverishment.
And just as for our farmers, it’s a pipe dream to count on the awareness of our American-controlled leaders to change the paradigm. However, if all citizens mobilize, then yes, there is hope of moving the lines…
What can we do?
I suggest you take the same action I did:
- Assert your rights to information technology and freedom with your CPAM (by Améli)
- Go to the Health Data Hub website and invoke your data protection rights.
For CPAM
- Connect to your espace améli
Use the chatbot (yes, you can’t send messages directly… Type “Informatique et liberté”)
In the Chatbot, click on “Click here” to open a new page and go to “Exercise your rights” (icon at the end of the page).
I suggest you type the following text:
“Hello,
In accordance with the RGPD I would like to assert my rights regarding the processing of my data. Furthermore, in order for them to be used for biomedical research, the investigator must obtain the informed consent of the research subject (Rule MR001).
For all these reasons, I expressly forbid you to transmit my data to any institution or other organization such as the SNDS (Service National des Données De Santé) and the Health Data Hub hosted on a Microsoft platform, which is unable to guarantee the security of our data with regard to American regulations.
You have 1 month (legal deadline) to respond to my request, otherwise a complaint to the CNIL will be initiated.
Yours sincerely “
For the Health Data Hub go to (link url), scroll down..
Click on contact us :
Complete the form as follows
You are a “Citizen
Your contact… ” Contact the Data Protection Officer “
Your name
Your e-mail
For the message, I suggest a message equivalent to the one sent to the CPAM:
“Hello,
I request that none of my health data be used by the HDH or its subcontractors. For your information, I have asked the CPAM not to transfer my data to the SNDS.
Furthermore, I have not authorized any healthcare professional, hospital or other healthcare establishment to transmit my data to you.
Furthermore, any biomedical research using patient health data requires the patient’s consent in accordance with MR001 methodology. As I have never given my consent, you cannot use or share my personal data under any circumstances.
Awaiting your reply within 1 month as requested by the RGPD, in case of no reply or unsatisfactory reply, a complaint to the CNIL will be filed.
Kind regards.”
Then you send.
It may seem derisory to you, but if so many of us do it, it’ll start to make some noise, and perhaps awareness will be raised and the lines will finally move!
It seems that in this battle, as in so many others, only the mobilization of citizens can have sufficient leverage!
Your mobilization can only be useful in defending our interests as citizens!