I dispose of my health

Which ends first: the Corona pandemic or the use of fax machines in health departments? Bets are still being taken. When it comes to digitization in the healthcare sector, Germany ranks second to last in Europe. Or as Professor Martin Gerschsays: “This is the Stone Age we are living in!” And we need to get out of it as soon as possible. Because outdated data transmission and storage, often still on paper instead of digitally, and thus wasted opportunities for data analysis for improved research and care, are dragging on through all areas of the health care system, to the detriment of patients, states the Professor of Business Administration, Information and Organization at Freie Universität Berlin.

Patients appear with a bag full of documents

The health insurance card that has to be scanned in at the practice, the vaccination book, referral slips, the pink and green prescriptions … The “bag effect” is particularly emblematic, says the scientist: “When they are new in a practice, many patients have a bag full of documents on them. That’s actually hazardous to their health!” All that is about to change with HEALTH-X dataLOFT, the “European Health Data Space.” Under the umbrella of the EU’s GAIA-X initiative, HEALTH-X is to be created – a health domain, just as there will be other domains for mobility or energy, for example.

HEALTH-X’s 14 project partners include Charité – Universitätsmedizin Berlin – joint medical department of Freie Universität and Humboldt-Universität – the Berlin Institute of Health, the Fraunhofer-Gesellschaft, the Hasso Plattner Institute Digital Engineering, the cloud service provider IONOS, and Siemens Healthcare. The mammoth task is to be tackled in nine work packages; the goal is to find technical, legal and organizational solutions to bring together data from all healthcare sectors – inpatient, outpatient, including nursing care, even in patients’ own homes.

The electronic patient file is currently not a solution

The project has little to do with the current “electronic patient file,” which only 0.5 percent of those with statutory health insurance use anyway. In Martin Gersch’s view, this is currently not a solution, because it is merely a “PDF tomb” in which individual files are placed instead of paper. “What we’re talking about instead is a contemporary data room in which all data is virtually available in the same language, analyzable and machine-readable.” Technically, this is “not witchcraft,” because corresponding technologies have long been used in other areas, the scientist emphasizes.

What is really special about HEALTH-X is that data sovereignty and decentralization are at the forefront, which means that there will be no central and therefore insecure data storage. Neither on a server of the health insurance companies, nor any authority or in a cloud. “People themselves will have control over their health data and will be able to decide freely on its provision and use,” explains Martin Gersch.

HEALTH-X offers self-determined handling of health data

This is to be made possible by a “data wallet,” an encrypted, electronic data wallet being developed by project partner polypoly. It will be available as an app for smartphones, tablets or computers. This would also finally put an end to the “bag”. Because one click on the smartphone is all it takes – and all previous lab results, X-rays and clinic reports are released to the new practice, – if the patients so desire.

For Peter Kraemer, an alumnus of Freie Universität who heads the GAIA-X Hub Germany – the interest group for GAIA-X users in Germany – data availability and self-determined data handling are indispensable for future medical and nursing applications. Up to now, both have only been inadequately guaranteed. “Through HEALTH-X, solutions are being developed that offer security, transparency, interoperability and scalability.”

In work package 6, for which Martin Gersch’s team has received around 900,000 euros of the total funding of 13 million euros from the German Federal Ministry of Economics and Climate Protection, the focus is on the economic aspects, including the operator model and the emerging solutions in and for the HEALTH-X data space. “The interests of different stakeholders – patients, medical staff, pharmacies, health insurance companies, clinics, research institutes, the pharmaceutical industry, health authorities, service providers and others – need to be organized and managed to create a sustainable data space,” says project team member Tim Schurig.


Innovation forums with research institutions, startups and established companies

Currently, the company is deep in research and analysis on the status quo of various existing models, explains his colleague Arthur Kari. “In parallel, we are planning innovation forums to which we will invite research institutions, startups and established companies, who can then contribute their ideas to the HEALTH-X ‘ecosystem’ in the long term.”

Based on four use scenarios, the project partner institutions are going into practical detail together. One is about breast cancer patients. From the initial screening, through the findings and treatment in the clinic, to follow-up care in an outpatient specialist practice, which may also be supported by telemedicine, all those involved should be able to communicate with each other in an integrated manner and access the same data. “So no more media disruptions, illegible doctor’s letters and paper documentation,” says Martin Gersch.

Data trustees enable data donations for research purposes

Although HEALTH-X is designed to be decentralized, patients will also be able to release their health data for research purposes. Such data donation will be developed in another usage scenario. There will also be new roles in the emerging data space, such as data aggregators and data trustees, who will play important roles in the interests of both patients and society as a whole. “This could be, for example, the Federal Institute for Public Health envisaged in the coalition agreement,” says Martin Gersch. “It could then also be given the task of accessing data for research purposes, which would of course be anonymized or pseudonymized beforehand.” This would also make it technically easy to set up an immunization registry.

Other EU countries are already much further ahead than Germany in this respect: Denmark, for example, has founded the Danish Health Data Authority (DHDA), which also acts as a data trustee. The DHDA pools data from all electronic sources and can be used, for example, in the event of a pandemic. And that’s why – unlike in Germany – we know very precisely not only how many people have been vaccinated against the coronavirus, but also much more about typical courses and relevant factors influencing the pandemic.

By Catarina Pietschmann

This post is also available in: German