eHealth: “The content of the doctor-patient consultation should remain private”

While digitalization is simplifying work processes in many areas, numerous doctors are becoming increasingly frustrated with the state-driven digital transformation of the healthcare system due to recurring disruptions to the telematics infrastructure (TI) – of the healthcare data highway.

We spoke to general practitioner Dr. Silke Lüder about these complaints, which heise online has recently received in increasing numbers, the current developments surrounding AI and the motions on digitalization passed by the Medical Assembly.

You tabled many motions at the Medical Assembly. What motivates you and which points are particularly important to you – both for patients and for your profession?

Together with other colleagues, we have been active at the German Medical Congresses for many years. For me as a doctor, it is the basis of my work that there is a protected space of trust in the practice. That every patient can rely on the fact that the content of the doctor-patient discussion does not leave a protected space and that medical confidentiality is observed. Otherwise, patients will no longer be able to express themselves openly, and we will no longer be able to make correct diagnoses or provide correct treatment.

For patients, informational self-determination has a fundamental right status. It also has a political dimension. If people can be blackmailed with any sensitive data from the healthcare system, democracy is also at risk.

We see that medical confidentiality is being increasingly eroded with every change in the law in recent years. Data protection is accused of hindering research and economic development. Yet, the billing data in the ePA, for example, which is also at issue, is completely unsuitable for most research questions. But a very interested industry is currently acting as a data vacuum cleaner to use every piece of data for AI training. Of course, there is a lot of money involved.

AI was one of the main topics at this year's Doctors' Conference. You and your colleagues pushed through a motion to better protect the spoken word in doctor-patient conversations. Is there a need for improvement?

The spoken word actually enjoys special protection under Section 201 of the German Criminal Code. There is currently a massive advertising campaign by IT companies for practices and clinics where, as the previous Minister of Health had already advertised, AI training data is automatically extracted from the doctor-patient conversation and then used to create doctor's letters. It may remain unclear where and how the data is processed. And consent is then perhaps only formally obtained by clicking on an information sheet, but this is not informed consent. There would clearly be a need for the new health minister to improve the law here.

It has also been repeatedly discussed whether the use of generative AI leads to doctors, especially younger ones, relying too much on the AI's outputs or suggestions. How do you see this?

We'll have to see in which direction this develops. We still don't know enough. It is certainly better for junior doctors to first think for themselves about how to write a doctor's letter. Experience is an important part of learning processes. If everything is automatically delegated to the AI, you will no longer be able to develop a good treatment recommendation for the doctors providing further treatment yourself. Especially as the AI only provides answers that are largely dependent on the quality of the original data, which is not transparent. The ultimate responsibility remains with the doctor. And the time pressure on colleagues from hospital administrators will then tend to increase.

Another issue, as already discussed at the Doctors' Conference and elsewhere, is energy consumption. For the sake of the environment, we should not use AI for even the smallest of questions. It consumes at least ten times as much electricity.

There is still a dispute about the fact that ePA data is automatically visible to everyone if they are involved in the treatment context. What does the medical profession want in this regard?

The latest legislation has fundamentally changed many regulations. Starting with the change from opt-in, where the patient actively decides in favor of an electronic health record, to an objection-based solution (opt-out). At the same time, an infinitely large circle of authorized users (doctors, clinics, pharmacies, care companies, speech therapists, medical chiropodists, physiotherapists, etc.) is retained. Only an insurance card needs to be inserted for access, without checking the person's identity. This abolishes medical confidentiality.

Recently, there have also been reports of a doctor being able to see information in the ePA that he would rather not have seen. Many insured people are unaware of this. Is there still too little information being provided?

Yes, the health insurance companies have not fulfilled their obligation to provide information. Most patients don't know what the ePA means for them and what effects it can have. Then fine-grained authorization management was abolished, as was end-to-end encryption and two-factor authentication (insured person PIN). All of this together has massively worsened the system. Previously, insured people would have had to enter a PIN to access the system.

With our support, the Medical Council has demanded that there must be an appropriately high level of data security and that all security gaps must be closed before the mandatory introduction on October 1st. I would have liked to have seen more far-reaching demands accepted: Restricting access rights to doctors, patients, and clinics as in Austria, where this has been the case for 10 years. And pharmacists should only have access to the medication list, but only if the insured person agrees, and not to all medical records. And we would like to see the preset billing data deleted from the ePA. Only 3 percent of all insured people have installed their health insurer's ePA app, which is difficult to obtain. This means that 97 percent have no actual control over what is in their ePA and who has accessed it.

There are repeated calls from politicians to use the ePA data for law enforcement or other areas. More favorable health insurance premiums have also been offered for donating the EPR data, or more precisely, for waiving the objection to the EPR. What have you been able to achieve on these points?

We have obtained a good resolution which states that there is not only protection against confiscation for the insurance card (Section 97 of the German Code of Criminal Procedure), but also expressly for the electronic health record. It is absurd that the last government thought it did not have to stipulate this. And even more abstruse is the recent demand for lower health insurance contributions for the “donation” of ePA data. There is now a very clear rejection of this new proposal by the Chancellor, at least from the perspective of the medical profession. And the political demand for a register for the mentally ill is just as wrong. This would be absolutely counterproductive because seriously mentally ill people would then no longer seek medical treatment.

You were able to gain an impression of the digitalization of the healthcare system right from the start. What have you observed?

Over the years, the overall impression has arisen that the originally propagated goals are no longer being pursued – for example, better communication between the inpatient and outpatient sectors. To this day, the clinics are not really actively involved. After 20 years and billions wasted.

Meanwhile, the topic of “data donation” for AI training and the sale of data to third parties seems to have come to the fore – although it is of course debatable whether “donation” is the right word in this context. The pressure on medical practices as data suppliers will be maintained. Anyone who decides against the TI will have to pay. The medical profession is less and less convinced of the benefits of the project. Many older doctors are planning to leave the profession prematurely due to the introduction of the ePA and the associated problems.

Another topic: your motion on “Ensuring the protection of children and young people in social media, video platforms and messenger services” was adopted at the Doctors' Conference. How is this to be guaranteed? Shouldn't parents be held more accountable?

Yes, protecting children and young people on social media is a difficult issue. Parents should certainly take on more responsibility. Also as a role model. But it's difficult when a small child in a baby carriage can see that their parents are constantly looking at their cell phone. As was also a topic at the Doctors' Conference, you could suggest to schools that they should at least ensure that younger children do not use their cell phones during school hours. But this is an issue that society and the state need to address.

(mack)