Electronic patient records: Stop talking about the transparent patient

Electronic patient records: Stop talking about the transparent patient

Suppose you find your neighbor unconscious in the stairwell. You have no idea what he has, maybe a heart attack? They call an emergency doctor, the minutes pass and finally the relieving blue light flickers on.

One might think that from now on the neighbor will be looked after in the best possible way. But that’s not the case. To do this, the emergency doctor would have to know everything about his previous illnesses as quickly as possible. Stroke? Operations? Blood sugar lowering medications? It’s somewhere on a paper letter lying in a drawer or in the family doctor’s computer. If the relative(s) cannot be reached, the patient remains a black box. At worst, he dies because of it.

The problem is known and should be fixed. Today the Federal Council dealt with the law to accelerate the digitalization of the healthcare system (DigiG) – so it can now come into force. It is intended to free German health care from its analogue chaos and help to catch up with the “decades-long backlog,” which the Federal Health Minister said Karl Lauterbach (SPD) speaks. It promises: never again black box patients for emergency doctors. The completely overburdened health workers should be freed from paperwork. Duplicate examinations because one doctor doesn’t know what the other is doing should be a thing of the past. The heart of the law is the electronic patient file, the so-called ePA for everyone.

From January 2025, everyone with statutory health insurance will get one, and anyone who doesn’t want it will have to actively object. If things go as the federal government wants, the findings of all doctors will be included in this ePA.

For those of us who are insured, there should be apps through which we can see our medication lists, doctor’s letters, X-ray results, laboratory results and much more. We decide about our data ourselves because we can set who is allowed to see which findings: Maybe someone doesn’t want the orthopedist to see the report about a stay in a psychiatric clinic. That’s possible configure. Even if not all functions will be there immediately: the times in which patients are sent from practice to practice just to transport their examination results are coming to an end. Far too late, but at least.

The problem is: The German ePA will probably be the most secure, but also the most impractical, digital file in the world.

No other country adheres to the General Data Protection Regulation as strictly as Germany. In the German version of the digital patient file, each patient has their own database – if someone were to hack it, they would have the data of exactly one person. A centralized digital robbery of thousands or millions of patient records is very, very unlikely.

In any case, the data is encrypted more securely than digitized health data from practices or hospitals has ever been since the 2000s. The ePA is now finally connecting the data and making secure exchange possible. From a data protection perspective, this is good and reassuring, but unfortunately the high level of security weakens the usefulness of the ePA.

For example, their application is very sluggish due to the many security layers. Just skim through the preliminary findings of a chronically ill person from the last five years? To do this, doctors have to have a lot of patience and time, which they should actually save to devote themselves to patients. Not only is there the problem that the documents cannot be opened immediately because of the encryption, they also have to be clicked on individually. A full-text search, a bit like Googling a patient’s medical history, is not possible. Because of data protection.

It would be more practical to print out the ePA

A doctor cannot search for fentanyl to see whether this painkiller has already been tried – and if so, whether there were problems with it and why it was not further prescribed. Doctors often ask themselves questions like this. The ePA does not fulfill the promise of making everyday medicine faster and easier in sensitive areas – because of its strict security architecture. Many doctors are already saying that it would be more practical to print out the EHR and browse through it on paper.

That could be changed. It’s just that politicians and associations are guided by the general mood – and in Germany the greatest good seems to be not the health of patients, but the security of their data.

The topic is polarizing and saturated with fear: the possible misuse of intimate health data is actually a terrible idea. But instead of clarifying, some media prefer to conjure up the transparent patient.

For example, this was the headline the MDR recently: “Lawyer recommends objection to the electronic patient file” – one would hope the good man never comes to the emergency room. ARD broadcast one at prime time comment, which claims that citizens can no longer decide what happens to their data. Supposedly critical reporting, but perhaps one should also mention what is at stake if doctors are because of the lack digitalization cannot treat their patients properly. In modern German terms, the debate suffers from incorrect framing.

This is what the electronic patient record should look like: From what we know, your data in the EHR is very secure. There is no danger in delay, because if you do not object now, you can have your digital patient file deleted at any time at a later date. As a patient or doctor, you can claim more benefits from the ePA, after all it is financed by all of our health insurance contributions.

We don’t become transparent patients, we become responsible patients.

Significantly, senior data protection experts from the supervisory authorities answer how Peter Schaar and Ulrich Kelber to the question of whether they want to use their electronic patient files, they answered explicitly yes. The often-used image of the transparent patient is also so wrong because, of all things, the ePA gives patients the chance to view and have access to their own health data for the first time. We don’t become transparent patients, we become responsible patients.

So everyone can benefit from the ePA, but one group in particular: women.

Telemedicine applications also come with the ePA. In the future, doctors and patients will also be able to communicate via messenger services. A relief not only for those around six million employees in the health system, 75 percent of whom are female. On the other hand, women also dominate. All the U-examinations with the children, speech therapy and physiotherapy appointments, trips to and discussions with the doctors are organized and accompanied primarily by mothers, daughters, daughters-in-law and granddaughters.

So if the digitalization of our healthcare system means we no longer have to call a doctor’s office ten times for a doctor’s appointment or simply complete an anesthesia consultation via secure video call, then it would not be presumptuous to say that the ePA would do the work of millions of people will make it easier for women. Both paid and unpaid. And when was the last time you could say that about a reform of the federal government?

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