Researchers call for better linkage of health data during discussions with members of the Bundestag

NFDI4Health met with members of the German Bundestag and other experts from the health sector at a parliamentary breakfast in Berlin on 13 March 2024. The central theme of the meeting was record linkage - the linking of health data at the individual level.

Sebastian C. Semler introduced the Health Data Use Act as the current legal framework. Semler is the Managing Director of the Technology and Methods Platform for Networked Medical Research e.V. (TMF e.V.). He emphasized: "The new law offers diverse opportunities for our healthcare system, however, there are still additional regulatory needs that need to be addressed. This includes, among other things, the simple and reliable linking of various types and sets of data." Prof. Dr. Wolfgang Ahrens explained the enormous potential of record linkage, as described in the recently published white paper by NFDI4Health. Ahrens is Head of the Department of Epidemiological Methods and Etiologic Research at the Leibniz Institute for Prevention Research and Epidemiology – BIPS. He explained: "Health data of an individual, currently distributed among research institutes, cancer registries, hospitals, and health insurance companies, need to be linked. This allows for uncovering the benefits and side effects of medications or the relation between lifestyle and disease risk." He added: "Important questions otherwise remain unanswered - to the detriment of prevention and healthcare for our population."

In the subsequent discussion, the participants agreed on the importance of creating a Unique Identifier. They see this as a fundamental step towards being able to clearly identify and securely link health data. The member of the Bundestag Matthias Mieves explained that the issue of the Unique Identifier is closely linked to the aspect of an electronic ID. Creating a unified solution here is a central goal of the federal government. The introduction of a central approval authority was also called for to eliminate the existing legal uncertainties. This authority could establish the necessary regulatory framework, enable uniform conditions nationwide, ensure data protection, and define responsibilities clearly. The participants also emphasized the importance of measures to educate on digital health, in order to strengthen understanding and acceptance for responsible handling of health data in our society.

Prof. Dr. Wolfgang Ahrens draws a positive conclusion: "I see the parliamentary breakfast as a great success. Research and politics were able to exchange perspectives and found a platform to agree on a common direction." He emphasizes the importance of further collaboration: "Now it's time work as one: Improved linkage of health data can make a significant contribution to promoting health research and improving healthcare."

NFDI4Health is part of the National Research Data Infrastructure (NFDI) funded by the federal and state governments. NFDI4Health aims to build a comprehensive inventory of German epidemiological, public health and clinical trial data. The collection and analysis of these data are essential for the development of new therapies, comprehensive care approaches and preventive measures. Personal health data require special protection. The declared goal of NFDI4Health is therefore to combine security and usability. The consortium is composed of an interdisciplinary team of 17 partner institutions. In addition, 48 renowned institutions from the health sector are involved; letters of support have been received from 37 international institutions.