As President of the DOG 2017/2018, Professor Dr. Nicole Eter focused on digitalization in ophthalmology. She played a leading role in launching oregis, the digital registry in ophthalmology. Even after her term in office, the director of the Münster University Eye Clinic continues to work on the topic, including as spokesperson for the AG DOG information technology in ophthalmology. In the interview, she explains how she currently assesses the status of digitalization in the German healthcare system.
Professor Eter, five years after your presidency: How digital would you rate healthcare and ophthalmology today on a scale from one for totally analog to ten for absolutely digital? What are the most urgent construction sites?
Professor Eter: I think the healthcare system in Germany is still not very digital compared to other European countries. On a scale of one to ten, I would give us more of a two. The introduction of an electronic patient record (ePA) has been discussed for years, but this has been repeatedly postponed due to data protection concerns. I think it is important that patients can view their data and that this data is also available for health services research with the patient’s consent.
Another point is data transparency: We currently have a very good overview of inpatient procedures in Germany based on the data that hospitals transmit in accordance with Section 21 of the Hospital Fees Act. However, an overview in the outpatient area is completely missing and the ePA will not be a primary solution here. Other countries, such as the Nordic countries, have been running national registers for years and have a much better overview of the health status of their populations.
There are still eye departments in hospitals that do not use completely digital diagnostics and documentation. I don’t think that’s appropriate anymore these days. At oregis we have already learned to define core data sets in ophthalmology. We should expand this to the entire structures in ophthalmology. It is important that the digital files from different providers are interoperable and that certain data fields are specified so that the information entered is also available for later analysis.
The oregis registry aims to improve patient care using digital means – one of your central concerns. Where is oregis today?
With oregis we have managed to build a national ophthalmology registry. After a detailed data protection concept that we developed with the technology and method platform for networked medical research (TMF) in Berlin, as well as obtaining ethics votes, several test clinics and practices now automatically feed their data into oregis. Oregis can collect data anonymously and pseudonymously. We are currently collecting anonymized data, so we do not yet need patient consent. We set out to establish automated connectors to the five largest practice management systems. We have achieved this with Fidus; Any practice that uses Fidus can connect to oregis with a simple click. The IFA connector is not yet fully connected. The data fields of the IFA file currently have to be linked to oregis. Initial discussions have already taken place with the other three large digital files, Duria, TurboMed and Medistar.
Fortunately, we are now able to draw initial evaluations from oregis. A first basic publication has been published (accessible via the QR code), two more with the topics “Myopia development under Covid” and “IVOM evaluations” have been submitted for publication. So the dream of 2018 has become a reality and we have overcome the technical hurdles of an ophthalmology registry! The first steps have been taken, now it is important that as many clinics and practices in Germany as possible join oregis.
Research using patient health data is also the focus of the Health Data Use Act (GDNG), which Federal Health Minister Lauterbach presented in the summer of 2023. From the DOG’s perspective, is the draft a step in the right direction?
The GDNG is intended to make health data available for research. The law makes it easier to use health data for public welfare purposes. For this purpose, among other things, a decentralized health data infrastructure with a central data access and coordination point for the use of health data is being built. This is the first time that data from different data sources are linked together. For example, a patient can release their data from the ePA through an opt-out procedure. This means that you would then really have good data available across Germany from various sources. I think this is a very good step.
Hand in hand with the GDNG goes the Digital Act (DigiG), which is intended to digitize care with the electronic patient record (ePA) as a central element. What potential do you see here?
The DigiG is intended to contribute to accelerating digitalization in the healthcare system. The core components are the ePA, the further development of the e-prescription, the digital medication overview associated with the ePA, digital health applications (DiGA) and telemedicine, which is intended to become an integral part of healthcare. In the future, a digital advisory board will advise gematik on all questions regarding data protection, data security and data use. Especially for a very specialized field like ophthalmology, it is extremely useful to get a reliable overview of a patient’s previous illnesses and current medications. It is currently very difficult, especially for elderly patients, to collect all this information before surgical procedures. Such digitalization would make our everyday lives much easier.
If we look five years into the future: Where would you say the healthcare system will be in terms of digitalization in 2028?
I hope that we will see further big leaps in digitalization in healthcare in the coming years. In this way, medical care could be managed much better, transparency would show gaps in medical care and patients’ access to their health records would support patient empowerment. I hope that Germany will take advantage of this opportunity and consistently continue on the path it has chosen.
The oregis project is being implemented with the kind support of Bayer Vital GmbH, Biogen GmbH and Novartis Pharma GmbH. Further information can be found on the homepage www.oregis.de.
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