The transparent patient

Before his political career, Jens Spahn was a pharmaceutical lobbyist. As Federal Minister, he remains true to his roots and is vehemently committed to the interests of the commercial health industry. To this end, he sends laws in series on the journey that have a large common denominator – the exploitation of patient and insured data for profit. An example of this is the Digital Supply Act, which the head of the Federal Ministry of Health (BMG) has just specified by decree. As a result, informational self-determination comes under even more intense fire. A luxury villa is definitely worth it.

Jens Spahn takes flight. Get out of the cosmopolitan-coloured Schöneberg, pure into the skewered-hermetic Dahlem, where in Berlin the well-off dissorely dislike from the common people. In the neighbourhood, however, the neighbours were also really mean, as RTL learned from his surroundings. The CDU celebrity and his husband Daniel Funke felt “disturbed and constricted” by “constant contact”. In fact, they have been approached several times in recent weeks on their doorstep, and “not always positive words have been spoken”. What could be more obvious than to distance himself, especially in the age of Corona.

The Federal Minister of Health can cost a lot to protect his privacy. According to the purchase agreement for the Nobelvilla from the 1920s, 4.125 million euros are due, in addition to a handsome sum for the renovation. Far away from the Berlin hustle and bustle miles, in the middle of a lot of greenery and with 300 square meters of living space, all sorts of space and tranquility will soon be beckoning to be for and below themselves. And when guests are there and get annoying, the couple can still retreat to the existing safe room.

Luxury in the Corona emergency?

Why the cynicism? No, it is not a question of getting involved in an envy debate. At least as long as it’s not about the dear money. The question of how Spahn finances the property on monthly salaries of 25,000 euros and Burda chief lobbyist Funke should not be of any further interest. Only so much: care will be taken for the rest of their lives, as long as they themselves continue to ensure that certain interest groups will be well and better off.

A side note should also remain that the process comes at a time when countless of Spahn’s “dear fellow citizens” are suffering pandemic-related hardship and he bears a share of responsibility for this as the pioneer of a months-long lockdown. In this situation, it would be good for the minister to endure some anger from the neighbourhood, instead of immediately looking for the vastness and hiding in a trutz castle. That is another reason why a bit of bad press is quite right for him.

He would have fully deserved it for another reason: while Spahn demonstratively asserts his claim to privacy against the intrusiveness of the outside, using money and influence, he lets all considerations simmer with regard to the personal rights of his voters and non-voters. Since he headed the Federal Ministry of Health (BMG), the 40-year-old has ignited a veritable canon of legislative initiatives, all aimed at providing the data of millions of patients and insured third parties, especially from the commercial health industry.

The Dam breaker

To mention just a few stages of his campaign: the Implant Register Establishment Act (EIRD), the Digital Supply Act (DVG), the Appointment Services and Care Act (TSVG), the Patient Data Protection Act (PDSG) with its regulations on the so-called Electronic Patient Records (ePA), the Patient Data Protection Act (PDSG), not least the second Pandemic Protection Act( Without exception, all these new regulations under the label “Innovation”, “Security” and “Quality” are legalizing access to massively sensitive data of unsuspecting people.

In the case of the DVG, which was adopted by the Bundestag in November 2019 and entered into force on 1 January 2020, this applies to: age, gender, place of residence, socio-economic factors for the analysis (…) of user preferences of certain insurance groups, information and billing data on outpatient and clinical treatments, by midwives or other service providers, number of days insured, sick pay days, information on diagnoses and second medical opinions, and much more.

As the online magazine Telepolis reported in the run-up to the decision, the law is in many respects groundbreaking or dam-breaking, which is why it is mainly dealt with here. The whole package includes several new provisions, such as on prescription health apps, video call hours or the expansion of telematics infrastructure. The serious points, however, are different: for example, it provides that statutory health insurance funds can cooperate with for-profit companies and participate directly in the development and testing of digital medical devices by acquiring shares in investment funds. In addition, digital products should be prescribed by the health insurance companies themselves without proof of medical benefit and without a medical indication and tested on insured persons in a trial phase – after all, only with their consent.

No objection to data theft

Where privately and publicly so blurred, the (informational) self-determination of the individual is badly ordered. That is why voluntary action will also be put in place when it comes to the data of the insured. The funds can evaluate them without consultation for an insured targeted needs analysis as well as to a new state research centre responsible for the final approval of the “innovations” in question. Here, the data can again be processed for a variety of purposes without the right to object and made available at the request of a whole range of interest groups, so-called users. These include universities, non-university research institutes, health insurance associations, medical associations, health insurance funds themselves, health reporting organisations and all other public institutions operating in the health sector. The number of accessable jobs thus add up to several dozen.

Of course, those responsible assert that all this is safe and that no one has to worry about being “unmasked” on the basis of the data. In processing and forwarding, however, the creators also rely on the method of pseudonymization, which critics have been accustomed to. As Netzpolitik.org wrote, only a few characteristics were sufficient to assign the information to an individual and thus to re-identify the person concerned. This is particularly true in the case of low cases such as rare diseases. In addition, the portal pointed to examples where the procedure could already be outwitted, be it credit cards or browser history when browsing the Internet.

At a hearing on the bill, cryptography expert Dominique Schröder from the University of Erlangen-Nuremberg recommended that only encrypted data be used according to the procedure of anonymization. Nothing came of it. In the meantime, Spahn has fleshed out the regulations of the DVG by adopting the so-called Data Transparency Ordinance (DaTraV) of 19 June. According to their wording, the Research Data Centre may well make ‘pseudonymised individual data’ available to third parties if this is necessary for a ‘permissible use’. This is formulated as one of three rule cases, and no longer as an exception, as the original language was. Above all, Spahn is punishing himself with lies. On the day of the adoption of the law in Parliament on 7 November, he reiterated in his speech that the data would always be made available anonymously “to those who do research with it”.

Against all criticism

In addition, the Minister ordered a massive increase in the scope of the data to be processed and passed on, to the extent that a re-identification risk is no longer even denied. The risk should only be “minimized” and only “with due respect for the desired scientific benefit,” the regulation reads. A large number of associations had warned in advance against a data overflow, including the Federal Association of Health Insurance, the Federal Association of Patient Services and Initiatives (bagp) or the German Trade Union Confederation (DGB).

Even the Federal Council expressed grave concerns in the legislative process on the DVG about “significant risks to the personal rights of insured persons” and the dangers of “discrimination” by “individual health profiles”. This did not help, because the land chamber was not subject to approval. Most recently, in June, when the DaTraV was still available as a draft, the Society for Informatics (GI) had urged:

“Access to the data held by the insured without any restriction and control poses an enormous threat to all personal and personal health data.” It was also stated that “the BMG is not seriously interested in a dialogue with the professional public”.

As Telepolis revealed in the seventh part of its series “Full Throttle Against Data Protection” in the seventh part of its reading series “Full Throttle Against Data Protection”, the danger situation for the 73 million legally insured persons nationwide has now dramatically worsened. As described above, the central data research centre to be created should be able to make the data available to a number of public bodies. These users themselves should only be allowed to pass on the data after the approval of a separate application. Nevertheless, the DVG determines the principle that “the persons entitled to use may not pass on the data made available (…) to third parties.”

Loopholes and incursion gates

This passage is no longer found in Spahn’s ordinance. On the contrary, it now states that data processing by third parties is “excluded for purposes other than that of advice”. This could make a small loophole a gateway for third-party interests, depending on the standards by which the research center issues a permit or not. The term “advice” alone promises great scope for interpretation. As we know, for example, from the Ministry of Defence and the Ministry of Transport, “advisers” have already written all sorts of laws there. And if health insurance companies are now allowed to join forces with startups, what could not be subsumed under “advice”?

Nor does the DGB “consider this requirement to provide sufficient protection against the use of the data for purposes other than those indicated,” as it stated in a may position paper. In this context, the trade union umbrella organisation also complained that a ‘mere self-commitment’ of the applicant was not sufficient to ensure the correctness and adequacy of the use of the data. That is what Spahn’s regulation says. This is compounded by the sanction mechanism in the case of infringements. Then there is the threat of a lump with the cotton wool, in the form of a “up to” two-year data withdrawal. After that, the offender is allowed to run back to the feeding trough.

“Third parties” can sometimes be all those who do research and do business in the healthcare market, the pharmaceutical industry, the medical technology industry, startups with their digital promises, online pharmacies, private insurers and cetera. The DGB therefore suffers from bad things, which is why it called in its opinion to “limit the number of third parties eligible for the use of data in advance to public actors and institutions belonging to social security institutions or not for profit”. Of course, Spahn did not follow the good advice in order instead to take the exact direction that the CDU-CSU Group had shown in a concept paper in December 2019.

Attack on self-determination

It laments a culture of debate that is “rarely driven by opportunities in this country, often and often with a risk”. The authors prescribe against the supposed misery: data, data, data. And promise little less than the liberation of humanity from disease, sorrow and suffering. Quote: “Data can save lives.” As a driver, of course, the commercial economy should precede:

“On the one hand, in order to quickly transport insights gained from the data trove to the patient and into the application; on the other hand, because of the location potential for the health and overall economy.”

The union group’s credo: high-quality data “made in Germany” should “become a unique selling point of our health and research location”. The text also praises: “Legislatively, digitization, supply and research have recently been put together in ever-increasing frequency.” This is how it is to continue, which leads to the announcement: “For the Digital Supply Act II, we are calling for research companies in the healthcare industry based in Germany to be included in the circle of applicants for the research data centre in accordance with Section 303e SGB V.”

It is not quite so clear in the law and regulation. Nevertheless, companies and corporations operating in the health sector will at least have indirect access to the data of millions of unsuspecting citizens in order to profit from it. And what is not yet can still be on the way to a comprehensive – totalitarian – digitization of the health care system – all for the benefit of humanity, of course. Spahn himself is a guarantor of this, since his enthronement the frontal attack against the self-determination of patients and insured persons with an attack-like intensity as a huge PR maneuver and finally fuelled by the driving forces of the Corona pandemic.

From lobbyist to fulfiller

All this follows a grand plan and a perfidious communication strategy. Telepolis diagnosed a “targeted overload of the media by a daily tsunami of new individual information snippets from the Ministry of Health with the result that even for critical journalists the connections behind it are hardly recognizable”. In addition, there is a frame setting that draws “progress” and “future” in the most dazzling colors and the “invisibility of data protection reduction” with legal names that obscure their thrust.

Although: “Data Transparency Ordinance” is almost a contribution to the truth. If you put the “people” instead of “data”, it is only a small step of thought for the “glass patient”. Spahn’s career from the pharmaceutical lobbyist to the head of the BMG was outlined by many alternative media shortly before his appointment. From this point of view, he and his policies were and are easy to see through. Unfortunately, the “quality media” prefer to make a secret of it and work on boulevardeskem like a “luxury villa”. Spahn will survive the headlines. The man is still needed for higher things.