The prescription on the little red slip of paper from the doctor, the yellow slip of paper is the sick note, then the diagnosis and lab results for the other doctor and where is the vaccination card again? Doctors often give you lots of important documents to take away with you, but until now it has been difficult for both doctors and patients to keep track of them. The electronic patient file (ePA) is set to change this from January 15, 2025. All health data in one place, accessible to treating doctors, pharmacies and patients themselves - that's the promise of the ePA. Lena Dimde, Product Owner at gematik GmbH, explains the benefits and vision of the electronic patient record. But how much does the innovation really make doctors' work easier? General practitioner Dr. Nicolas Kahl shares his perspective on the ePA from a medical perspective.

Nicolas, what is your basic position on the ePA and what opportunities do you see for day-to-day work in your practice?

Dr. Nicolas Kahl: In the healthcare system, we are used to constantly chasing findings and not having all the information about patients and their patient history at our fingertips. That's why the goal is to have a well-functioning ePA where we can find this data in order to optimize treatment. That is very important to us. Nevertheless, we are (optimistically) excited to see how well the technical implementation will work.

How will the ePA change your day-to-day practice?

Dr. Nicolas Kahl: It is important to clarify where the responsibilities lie. Who has to insert the findings? Who is allowed to delete and the like? What are the access rights? This has all been clearly clarified, but it also needs to be communicated. In other words, we would like to see a good information campaign so that insured persons know how to use their ePA. Many of my colleagues are also currently worried that they will have to digitize the patient history of the past 20 years for every single patient, which they are not supposed to do. That's why we need clear communication so that everyone involved is aware of what their own task is, how the EPR will develop and when which functionalities will be available. This will prevent such a negative attitude from arising in the first place.

How can you enable less tech-savvy groups in particular to develop more enthusiasm for and trust in the ePA?

Dr. Nicolas Kahl: Yes, that's an exciting question, because we GPs also enjoy a great deal of trust, and hopefully rightly so. The health insurance companies are currently writing to their policyholders and informing them about the ePA. But then it's still the case that patients come to our practices and discuss with us what the ePA is and why they are being contacted. We find that patients are reluctant to embrace digitalization. This means that they think their treatment will change or that they can no longer be treated in the same way as before. Of course, we can allay their concerns. In addition, the ePA can be co-designed by the patient, but it doesn't have to be. This means that if a patient does not actively decide against the EPR, they would still receive one, which doctors and hospitals can then also use. But they won't be able to access it via the app and delete documents or influence how long doctors can view data there. In other words, you simply give up a bit of creative freedom if you don't download this app and don't want to actively participate. However, it is still possible for doctors and the like to exchange findings that are relevant to the patient. This means that even patients who do not want to actively engage with the eHR can still benefit from the advantages of an eHR.

Do we need more or less data protection in connection with the ePA?

Dr. Nicolas Kahl: On the practitioner side, we are of course always interested in and focused on the health of our patients. And a colleague recently said that patient protection must always take precedence over data protection. This means that we always want to act in the best interests of the patient. However, I can also understand that health data is sensitive data and must be secure. Technical security cannot be guaranteed from within the practice. I think that anything that can be accessed anywhere on the Internet will never be 100% secure. Of course, gematik will ensure that security is as high as possible. But we also have to look at the risks and health consequences that can arise if we don't know enough about patients. For example, if we don't know what their allergies were, or if unknown patients come to the emergency room and we don't know what illnesses they are suffering from. There has to be a balance. In other words, we should only take as many risks as necessary in terms of data protection. For example, self-deletion mechanisms and limiting the duration of access to data can help here. But we also need to keep it practicable. For example, it makes no sense for me to ask a patient to insert their insurance card every time. The way it is planned that the practice will have access to the ePA for 90 days by default when the insured card is inserted is a sensible time frame in my view. It is important to find pragmatic solutions so that data protection does not lead to a situation where we have a nice technical solution but it is ultimately impractical.

Is the ePA limited to Germany alone?

Dr. Nicolas Kahl: We see time and again that patients go on vacation and have forgotten their medication, where we would like to issue prescriptions across national borders. That will happen. And it should be the same with health data. We would like to see a translation tool where important data can be evaluated in other languages. I don't think that's the main benefit of an electronic health record, but it's something that will become standard in the long term.

What advice would you give your patients?

Dr. Nicolas Kahl: I refrain from recommending them for or against, but I recommend that they take their time to inform themselves and think about the personal advantages and disadvantages. It helps to think about scenarios when you might need it and whether you would be happy with it if you decided against the EPC. Whether it's a medical emergency where the data is needed or, conversely, if you have your data stored in the ePA, whether you could live with it if you were to fall victim to a hacker attack and your data was tapped. You realize relatively quickly that patients tend to lean in one direction or the other. And it's up to everyone to decide for themselves. I have the feeling that most people actually consider the improvement of treatment to be the more important good.
On the other hand, when we have patients who come to us from other practices, for example, they are always surprised that we don't have access to the data and this is always met with a lack of understanding. That's why I believe that many patients are actually more advanced in their thinking than we assume in some discussions.

Lena, as an employee at gematik, you are responsible for the technical side of the electronic patient record. What advantages does the ePA offer from your point of view?

Lena Dimde: We are not only on the technical side. The coalition agreement has already shown that we want to switch from the opt-in procedure to an opt-out procedure. Back then, we started to think about what this would mean in concrete terms. It has now been almost two years since we considered how we could arrive at a good technical target image for the electronic patient file. At this point, we initiated a large series of workshops in which, on the one hand, we involved the gematik society, for example the KBV or the German Medical Association. We also involved a number of specialist societies and professional associations and asked ourselves the question together: How do we achieve an ePA that users want to benefit from? We invested a lot of time in this. At some point, it will be possible to draw technical conclusions from this, but our focus was primarily on how the ePA can be integrated into the care process so that it is perceived as added value.

So the concrete advantage is that it can be integrated into the workflow between patients, practices and perhaps also hospitals for medical care?

Lena Dimde: Exactly. For the first time, we have a patient-centered view of medical information. We start with different information in the PDF. Here, for example, we are talking about laboratory findings, image findings, hospital discharge letters, doctor's letters or surgery reports. Another big advantage will be that we will have medication information in one place for the first time. This means that in future a doctor will be able to see their own prescriptions as well as those of their colleagues by linking ePA and ePrescription. This is a big step forward. You can not only see the prescriptions, but also what the patient has actually picked up, which in turn can provide conclusions for the treatment.

So the advantage is that I always have access to everything that's in there?

Lena Dimde: Exactly, there are two limitations that need to be considered. Firstly, there is the possibility that documents may be deleted from the EPR. Patients can do this themselves, but the doctor can also do it on request. And patients have the option of hiding documents. For example, if there is a sensitive finding in the ePA that you would like to have available digitally but do not want to share with doctors, you can hide it. This means that I make the document invisible and am the only person who can see it.

So as a patient, I always have full control over my data?

Lena Dimde: Absolutely. There are various support options. Basically, administration is carried out via the ePA app. However, we also know that there are certain groups of people, such as very young or possibly very old people, who do not want to or cannot carry out the administration themselves. In this case, there is the option of appointing representatives and setting them up technically via the ePA app. No requirements need to be met, except that the person who is to act as a representative must have a cell phone. Otherwise, there are ombudsman offices at the health insurance companies that have been set up and can be contacted if, for example, a certain institution does not want to give access to the ePA at all.

What impact will the ePA have on healthcare in general?

Lena Dimde: I have to say that I'm also curious to see how it will be integrated. The topic of medication is the one where I would say it will definitely bring about changes. In the past, we have spoken a lot with hospitals and visited them. The medication anamnesis is a very big issue there in particular, which can sometimes take 30 to 60 minutes. In the end, nobody knows exactly whether something is missing or not. We hope that the medication list in the ePA will make things much easier at this point. This is because all the information that was also entered via the e-prescription will be visible there.
The same applies to doctors' surgeries. I believe that medical assistants in particular are familiar with the situation where patients are at the surgery and have forgotten their results at home, or have not even received them. This always causes a delay. Either a follow-up phone call has to be made or the patient has to come by again, which means more staff traffic in the practice. All this will hopefully be resolved with the ePA, because we have the medical history digitally in one place and conveniently accessible.

Health insurance companies, medical practices, patients, software solution providers - who is responsible for communication?

Lena Dimde: The providers of the ePA are the health insurance companies. They provide information about it and make these apps available to their policyholders. This means that we, as gematik GmbH, specify how it should be designed, but we do not create a specific technical product. Communication is a crucial issue. The introduction of the ePA is more about change management than a new tool, because it opens up completely new possibilities that we didn't have before. This has to be taken into account in communication. And there is a clear division of roles here. Health insurance companies are obliged by law to inform patients. The Federal Ministry of Health has also taken on the supervision of this communication mandate to citizens. For example, a campaign was launched last week in which an Infomobile is on the road throughout Germany, where citizens have the opportunity to ask their questions about the ePA. There will also be posters, social media posts and so on. In other words, communication with policyholders will be addressed at this point. However, policyholders are only part of the story. We also need the service providers who are involved with the electronic patient record. As gematik, we are currently making a lot of efforts to ensure that specific and ideally always the same messages are placed in the various places. To this end, we have set up various working groups that focus on different areas, such as pharmacies, surgeries, hospitals, industry and so on. The groups examine the information needs and concerns of these specific groups of people. Or also which documents or which information would help them to deal more confidently with the electronic patient record. We have now been able to set up an information hub on our website that provides specific information on this. It is quite clear that the information mandate does not lie with the doctors. There are also questions in the surgeries. And we want to provide the best possible support at this point so that information materials are available that can then ideally be passed on easily. This means that communication is also a task that cannot be handled by one institution alone, but must be tackled by all together and this is where we, as gematik, are trying to bring the threads together in our role.

Data protection is an important issue with such sensitive data. As a patient, do I have to take care of this myself?

Lena Dimde: In principle, only those institutions with which the patient is in a so-called treatment context may access the ePA. This means that the EPR is not simply open to everyone. How the EPR is accessed is kept simple. The patient must enter the electronic health card at the doctor's once so that the doctor can then bill the patient. Inserting the card ensures that the institution can access the ePA for 90 days. The patient can terminate this access at any time. This can be done either via the app or via the ombudsman's office. It works in exactly the same way at the pharmacy, for example. There, you need the card to redeem an e-prescription. In future, the pharmacy will be able to access the electronic patient file for three days. The legislator has chosen different means to limit the length of access.

Would the patient file also be conceivable in an international context?

Lena Dimde: Definitely. This is currently being brought in by European regulation and falls under the heading of EHDS. There are various topics here. Firstly, there is the International Patient Summary. This is a kind of cover sheet on which medication information, diagnoses, allergies or other information that is necessary in an emergency is recorded. In the same way, however, it is already planned that image findings, laboratory results or hospital discharge letters, for example, will be exchanged in a European context. In other words, we are now looking purely at the domestic German context from January 15. Gradually, however, there will also be opportunities to exchange corresponding European data.

What recommendations do you have for patients on the one hand and medical practices on the other?

Lena Dimde: Let's start with the patients. Basically, there is no need to be afraid of the electronic patient file because it should ultimately make things easier. It should ensure that you can take care of the important things when you are ill, namely your health. This means that I can go to the doctor with the ePA and he can access my information. But it's also an opportunity to get a much better overview of your own health data. For all those who will have to deal with the ePA at a professional level, it is a change. With the e-prescription, a process was replaced from paper to digital. The ePA is different. This is because I will have information that I didn't have before. In concrete terms, this means that you have to get to grips with things and see what the EPR actually brings to everyday life. In my view, actively engaging with the electronic patient record is extremely important. We are now starting on January 15 with PDF documents and the electronic medication list and we will continue to develop until we eventually have the electronic patient file that everyone has always been waiting for. In other words, this is a step-by-step development. We are taking the first steps and are excited.

The interview was conducted by Christoph Raithel, Team Leader Event at Bayern Innovativ GmbH.