Kuipers' semantic quackery
The medical records of everyone should be made available through a European Health Data Space (EHDS). Brussels wants it, the minister wants it and it is in the latest EHDS proposal. There are no exceptions and yet the minister is announcing a 'opt-out' to. How can that be?
The EHDS will require healthcare providers to report (virtually) all medical data to a 'National e-Health Contact Point' (NCPeH-NL). That data can then be used in healthcare (primary), for research and innovation (secondary) and policy purposes.
A 'opt-in' would mean that your data would be notified only after your explicit consent. At a 'opt-out' your data will automatically be included in the system, unless you object.
The House of Representatives called for a 'opt-in' for the EHDS. Minister Kuipers (VWS) is now coming up with a 'opt-out'. At least, that is how he makes it appear.
In a packed auditorium, officials from VWS on 7 November A presentation on the EHDS. Negotiations are not yet complete, but we get a rough understanding of how the EHDS will work. With due pride, an official announces that a 'opt-out' will come and that means your data will also not be included in the EHDS. A subsequent official is slightly less adamant. For 'secondary use' they are not quite there yet. The Commission is concerned that people are losing their 'opt-out' actually going to use it (???!!) and they are still discussing options for its exact content.
So there will be a 'opt-out' for the EHDS, but at the same time not.
With the latest proposal for the EHDS the situation becomes clear: you can for 'secondary use' limit the sharing of your data with third parties. That is not a 'opt-out', but they call it that.
Responding to PVV parliamentary questions, the minister there another step: there will be a 'opt-out' for 'primary use', for within healthcare, that is. Citizens can set that up via a "Online provision, or other appropriate solution".
But that's still not a 'opt-out'! Every citizen can now restrict sharing for two of the three uses (primary and secondary use), but remains included in the EHDS. European institutions and the State, if possible, will still have access to all medical data of everyone, for 'policy purposes'.
So: a cow is an animal with two legs, wings and a beak and the Minister promises the House of Representatives a cow. It takes a while for MPs to grasp the semantic magic trick and that is exactly the intention.
In addition, the ministry has decided to increase the Online Consent Provision Mitz labelled a 'generic facility'. As with the National EHR, the minister wants a single solution for access management of all medical data of everyone. Do you want not in the EHDS, then must so you get registered in Mitz. Let's hope the minister comes up with "another suitable solution".
Update Jan 19, '24 - In a response to this article, the Ministry of Health indicates that the EHDS consists of two separate systems. You will soon be able to unsubscribe from both. Data will then not be accessible via the EHDS. Citizens will not be indirectly required to start using Mitz.
"Other appropriate solution"
If you go to your doctor, part of that treatment relationship is that everything remains secret. It is nobody's business what you discuss with the doctor. If they want to know something, they can nicely ask permission for that which they want to know (and nothing more than that).
If there has to be an 'opt-out', then there is only one. Which then ensures that your does not exist in the EHDS and you put those on one place and on one Way fixed: you let your GP know.