Enhancing Secure and Compliant Health Data Use: Health Study Hub and Datennexus Win Post-COVID Challenge

The Post-COVID Challenge is a competition launched by the Federal Ministry for Economic Affairs and Climate Action together with the Federal Ministry of the Interior. Its aim is to develop innovative, responsible, and secure approaches for reusing data in research. With its strong practical relevance and technical feasibility, the Challenge presents a real-world application case for pioneering data solutions across society, science, and policy – the kind that may be developed within the framework of a potential German Data Institute.

First place went to the Datennexus, developed by the d-fine consortium. The solution is based on a decentralised data ecosystem that enables data protection-compliant linkage of existing data at the individual patient level while supporting flexible analyses. The Health Study Hub – developed by NFDI4Health – is part of the solution: it contributes its extensive data catalogue and enables effective data discovery through its metadata schema.

d-fine's project impressed the jury with its technical excellence and clear societal value: using a so-called transaction-based data trustee (EuroDaT), datasets from various sources can be linked at the individual patient level in compliance with data protection regulations. Dr. Robert Görke, Head of Healthcare and Managing Director at d-fine, emphasised: “In our work, the discoverability of data has proven to be one of the predominant challenges in the healthcare sector. Collaboration with NFDI4Health allowed us to easily reuse their existing comprehensive data catalogue, enabling us to solve this core challenge efficiently and sustainably. We are convinced that a health data space built on existing synergies and valuable components of the ecosystem makes a vital contribution to the sustainable use of data in Germany. The fact that the jury shares this view and awarded us first prize in the Post-COVID Challenge signals that this collaborative path will continue to bear fruit.”

The foundation for data discoverability lies in the NFDI4Health metadata schema, which defines structure and standards for describing health data, enabling systematic capture and organisation. Prof. Dr. Juliane Fluck, spokesperson for NFDI4Health, explains: “The standardised description and digital accessibility of health data through our metadata schema is a key step towards sustainable and interdisciplinary health research. With the Health Study Hub, we are building a bridge between data availability and its practical use in research.” Already in its predecessor project Task Force COVID-19, funded by the German Research Foundation (DFG), parts of the NFDI4Health consortium focused on the discoverability of COVID-19 studies in Germany, as well as their standardisation and the interoperability of their research data.

The jury for the Post-COVID Challenge – made up of experts from academia, politics, and industry – particularly praised the scalability and practice-oriented bottom-up approach of the solution. The vision: an open, fair, and secure data model that enables new insights in post-COVID research and can serve as a blueprint for other medical fields.

NFDI4Health is part of the National Research Data Infrastructure (NFDI), funded by the German federal and state governments. NFDI4Health aims to build a comprehensive inventory of German epidemiological, public health, and clinical study data. Analysing this data is key to developing new therapies, integrated care approaches, and preventive measures. As health data relates to individuals, it requires special protection. NFDI4Health is therefore committed to uniting security with usability. The consortium consists of an interdisciplinary team from 17 partner institutions. In addition, 48 leading organisations in the health sector have pledged their participation, and letters of support have been received from 37 international institutions.

d-fine is a European consultancy specialising in analytical and quantitative challenges and the development of sustainable technological solutions. With over 1,500 staff with scientific backgrounds and years of practical experience, d-fine delivers tailored, efficient, and sustainable solutions for more than 500 clients across all sectors of the economy and public services.