Germany-wide standards for coronavirus data

Scientists across Germany are studying the novel coronavirus, SARS-CoV-2, and the disease it causes, COVID-19. It is now important to bring together the findings and facilitate their collaborative use. Stakeholders from all parts of the healthcare system have therefore joined forces under the Corona Component Standards (cocos) Initiative. Representatives from the Berlin Institute of Health have been playing a leading role in these efforts. The aim of the initiative is to establish common data formats and standards for data related to COVID-19 and SARS-CoV-2. University hospitals have agreed on a German Corona Consensus (GECCO) Data Set for use in the national network against COVID-19.

Scientists throughout Germany are currently researching the novel coronavirus SARS-CoV-2. They want to find out how to keep the infection rate low, why some people get severely ill but others have only mild symptoms, how the virus affects the bodies of those who recover, and of course, what is the most promising route for developing a vaccine. Institutes and universities as well as start-up companies and government agencies are gathering data, results, and information, which are most valuable when they are shared. The cocos Initiative seeks to ensure that the different approaches come together and thus become more effective.

“In order to reap the greatest possible benefit from the myriad of data, it is necessary that they are collected and stored in common formats and standards,” explains Professor Sylvia Thun, who heads the Core Unit eHealth and Interoperability at the BIH. “By using standardized languages like SNOMED and LOINC, the data can not only be clearly interpreted, but also pooled European-wide, across national borders, and used for research purposes.”

The first task was to define what data should be collected and in what format. The team led by Professor Thun created a “consensus data set” of COVID-19 patients for the National Research Network of University Hospitals Against COVID-19. It contains all relevant information, starting with personal data like age, gender, height, and weight, followed by lab results like blood pressure readings or cholesterol levels, risk factors, medication use, as well as symptoms and therapeutic procedures performed. Julian Sass, a doctoral student working with Professor Thun at the BIH, reports that the team made incredibly fast progress: “Although we had to reach agreement with more than 30 university hospitals on more than 80 core data elements, we needed just under three weeks to complete the data set.” Data from research labs are also recorded in a standardized way and then shared on servers specifically reserved for this purpose.

Professor Christof von Kalle, BIH Chair for Clinical Translational Sciences and Director of the BIH Clinical Study Center at Charité, is coordinating the coronavirus research at the BIH and Charité. He stresses the importance of recording study and research data in a standardized format: “It has never been clearer than with COVID-19 that it costs human lives if we can’t access and process our health data. The decentralized and coordinated recording of similar data using the GECCO Data Set brings us a decisive step forward for this and future pandemics. We can literally learn from every patient in Germany.”

Professor Axel R. Pries is Dean of Charité - Universitätsmedizin and interim Chairman of the BIH Executive Board. He sees the project as very much in line with the BIH’s motto “Turning Research into Health”: “The mission of the BIH is translation. The only way that targeted therapies against the virus and effective strategies against the pandemic can be developed is if all participating entities make the data they collect available in a common language. We are thrilled that we at the BIH can help make this a reality.”

The cocos Initiative was started by the National Association of Statutory Health Insurance Physicians (Kassenärztliche Bundesvereinigung, KBV), the health innovation hub (hih), the Federal Ministry of Health (BMG) and Health Level 7 (HL7) Germany. Other institutions and organizations in the health sector have since joined the initiative, including the Robert Koch Institute (RKI), the Federal Institute for Drugs and Medical Devices (BfArM), the German Institute for Medical Documentation and Information (DIMDI), the Medical Informatics Initiative (MII), the Network of University Hospitals, and the German Association of Health IT Vendors (bvitg). The number of organizations supporting the initiative continues to grow.