Patients become raw material in Agema's new data factory

With new plans from the Ministry of Health, all our medical data will soon be retrievable via a giant data platform to run in a cloud solution of US-based Microsoft. The aim is to fully centralise all healthcare communications, after which our data can be reused for an almost unlimited range of purposes.

Stealth strategy

The Christmas Chamber letters from the Ministry of Health are now a classic. After all, when we are all sitting around drinking wine, nobody follows the House of Representatives website. That may be a strategic consideration, but If you have 47 (!!!!) pieces at a time sends to the House of Representatives, then little remains of that stealth strategy.

Just reading those (estimated) 300 pages is a task, but the Minister is responsible for all that content. This cascade of letters raises the question of who is really in charge at the Ministry of Health.

Truth lie

Think of a product packaging with "0% Fat!" on the front. You'll find the significant amount of sugar in small letters on the back. The ministry has its own variation of this:

"Also, citizens will have more control over health data, allowing them to take more control over their own health." (27529 no 327, below)

This rhetoric seems to be copied from the EHDS. We get 'control' at the front end of a copy, but lose control at the back end over who else has access to our medical data. Moreover, requesting a copy is already possible now and, in accordance with current legislation, we have (in principle) all control.

PBM

At the initiative of the Patients' Federation For a few years now, anyone can use a Personal health environment (PBL). That is where all your medical data comes together, to be displayed in nice dashboards, but only 5% of the population uses it. Most people simply don't need it.

So the ministry decides to reduce the number of PBM providers to three. If nothing has changed in two years (27529 no 327, p4), then the plug may go out altogether.

The real problem, however, lies in the idea that everyone should have a PBM. The PBM was conceived as a place for us, as citizens, where we can independently direct our care and it is crucial that that place is there, regardless of the number of users.

That abolition cannot be done just like that, by the way. The European EHDS regulation will soon require the Netherlands to have such a facility.

MGO

The new rabbit out of the top hat is called My Health Environment (MGO) and the minister now wonders whether this requires and legal amendment (27529 no 327, p6). That seems bizarre. Why all the trouble, when PBM is a fine solution?

That starts with Ernst Kuipers. Even just before his departure as minister, he decided to implement an initiative of his previous employer, the Erasmus MC, on the ministry's agenda: Cumuluz. The aim of Cumuluz is to all health data of everyone to be accessed through a giant data hub. This data should then be made available to "prevention, care and welfare" (27529 no 327, p6), such as "policy areas for municipalities, the state and social partners, related to supporting people, enhancing liveability and promoting participation." (27529, no 326 footnote 11).

My Health Environment should become a perusal function, but using a data centre requires your consent. The ministry now wants to get rid of that, so that everyone can automatic can be included. After that, the PBM can also be easily connected, is the idea. (27529, no 326 footnote 7).

DUS

As citizens, we currently have all control over our data as well as access to a PBM that gives us independence and autonomy (and the copy).

The ministry's new rabbit adds nothing to this, but does make us dependent on kind of Rural SPD on anabolic steroids. Under the guise of 'more say' the minister is heading for a legal basis that, besides the perusal function, also paves the way for a wide range of Orwellian dreams.

Healthcare will become a data factory for all sorts of other interests, with our medical data (our private lives!) as the main raw material. In that playing field, we as citizens will soon have no say, except for the copy.

AND

Who will soon be in control? If the plans go ahead, our medical data will be accessed through a US cloud provider (Microsoft).

Not only are our private lives reduced to raw material. In realising this, we are mortgaging our free democratic rule of law. We can lay down so many agreements on paper, when it comes our data are retrievable in the US and then we should be able to fall back on proprietary solutions.

Just when that realisation is beginning to dawn on politicians, the Ministry of Health is selling off our most personal data, without a clear idea in advance of what that will achieve and without a thorough public debate on whether that is desirable.

For delivering care to patients, at least, it is not necessary.