Health Research Data Center starts work

Contents

From today, researchers from science and industry can submit their applications for data access to the Health Research Data Center (Forschungsdatenzentrum Gesundheit, FDZ Gesundheit). Federal Minister of Health Nina Warken (CDU) hopes that this allows two supposed opposites to be combined: Health research at the highest level and, at the same time, compliance with the highest data protection standards.

Hopes are high. It is a special treasure trove of data that the FDZ Gesundheit is to help unearth from today: All billing data from the statutory health insurance funds from 2009 to 2023 is now available there in full, for which there was also no option for those affected to object. Further data sets are to follow in the future – including from the electronic patient file, where an opt-out is then possible. The participants at the launch press conference in Berlin this morning were unable to say how many users had already submitted an objection to their health insurance companies.

The President of the Federal Institute for Drugs and Medical Devices, to which the FDZ Gesundheit is organizationally affiliated, described the current status: 20 employees would take care of data storage and applications. It is still unclear how many applications will actually be submitted, reported Karl Broich in the morning. These must fulfill several criteria before they can be approved – Among other things, applicants must prove that their project falls within the legally prescribed purposes.

Pharmaceutical industry sees great opportunities

Pharmaceutical companies are among those who can and want to submit such applications. For Han Steutel, President of the German Association of Research-Based Pharmaceutical Companies (VfA), it is all about gaining insights into the efficacy, risks and side effects of drugs. It is good that Germany is now taking action with the FDZ. It is significant that pharmaceutical companies can also conduct research with this data, as it is one of the most important drivers of medical progress. National databases are often inadequate for rarer diseases. He therefore hopes for further data sources, for example, from cancer registries, but also a faster link to the European Health Data Space (EHDS).

Oncologist Sebastian Hallek explained that, from his perspective, the question of the extent to which changes to therapy concepts are implemented quickly and correctly could finally be answered. The cancer researcher from the University of Cologne cited the fight against blood cancer as an example, where radiotherapy no longer takes place today – where knowledge of differences in efficacy would, however, primarily be proven by studies. The FDZ data would finally make this verifiable – and resistance, for example, can hopefully be better recognised.

Health insurance companies hope for research results from their own data

The health insurance companies are also hoping to gain many insights from the data sets collated by the FDZ Gesundheit. "The decisive advantage compared to previous analysis options lies in the completeness of the data," explained Stefanie Stoff-Ahnis, Deputy Chairwoman of the Executive Board of the National Association of Statutory Health Insurance Funds. This is a special feature on two levels. Firstly, the sheer number of people whose data can be used there: 75 million insured individuals. "And secondly, across almost all healthcare service areas," says Stoff-Ahnis. 600 million cases with 8 billion data records would be transmitted, just like many other data from the healthcare system. Stoff-Ahnis was visibly pleased that this data would now be available across all sectors and in a timely manner.

While Germany is often considered a developing country when it comes to data analysis, its largely uniformly organised statutory health insurance system makes it an outlier in terms of data quality. Accordingly, the health insurance funds themselves want to conduct research on this very data. Stoff-Ahnis is hoping for a significant improvement in the quality of care, but considering the costs of the system, the search for potential savings based on the data will foreseeably be another decisive factor.

Minister sees maximum possible data protection and data security

Federal Health Minister Nina Warken (CDU) is confident that both data protection and data utilisation will be possible. The project has been closely coordinated with both the Federal Data Protection Commissioner Louisa Specht-Riemenschneider and the Federal Office for Information Security. "We are convinced that we have found a good framework," said Warken.

The FDZ Gesundheit is also a contribution to greater sovereignty. Citizens would currently make their highly personal health data available to private providers without further ado, but entirely different standards would rightly be applied to the projects initiated by the state. "What we are launching here today is unrivalled and is something where we are at the forefront of the movement and creating an opportunity for the healthcare landscape and the industry," said the Minister.

(mho)