Medical data will speak a common language in the future

All university hospitals across Germany have joined forces under the Medical Informatics Initiative (MII) to establish interoperable digital infrastructures. The aim is to facilitate the collaborative use of health and disease data across multiple institutions and sites in order to improve research and develop more targeted therapies. All participating entities have now agreed on a common language: the international terminology standard SNOMED CT. It enables clinicians worldwide to securely exchange patient data and research results digitally. As of this week, the German Federal Ministry of Education and Research (BMBF) has made it possible for all MII participants nationwide to obtain a SNOMED CT license. BIH scientists, who play a key role in the Medical Informatics Initiative and have already been using the clinical terminology in their work, welcome the licensing of SNOMED CT.

Medical data often come from a variety of sources: from patient health records, from imaging procedures or from genetic sequencing. When the goal is to develop the best therapy, clinicians need cancer patients, for example, to bring their X-rays and blood test results as well as information from DNA analysis. These data must be comparable in order to bring the information together, analyze similar cases in other countries, and draw the right conclusions for therapy. “Obtaining licenses for SNOMED CT enables us to speak the same language and collaborate better internationally,” says Professor Roland Eils, founding director of the BIH Digital Health Center.

Making international data comparison a reality

Eils heads up one of the MII’s four consortia, the HiGHmed consortium, whose members include Charité – Universitätsmedizin Berlin and Heidelberg University Hospital. With the help of SNOMED CT, programs can translate the various medical terms into internationally standardized codes. “SNOMED makes clinical data comparable not only throughout Germany, but also internationally, thus facilitating the use of these data for research purposes,” Eils says. “Going forward, this will enable us to diagnose diseases faster and develop better preventive and therapeutic strategies.”

Unique identifiers for medical terminology

Before scientists can exchange and collaboratively analyze health data, they must first agree on what is meant by the different terms used in medical documentation. For example, the German abbreviation “HWI” could refer to either Harnwegsinfekt (urinary tract infection) or Hinterwandinfarkt (posterior myocardial infarction). Computer programs need unique codes and key contextual information to process the data. Such a unique coding system is possible thanks to medical nomenclatures and classifications like SNOMED CT.

SNOMED CT also plays an important role in terms of standardizing the different names that are used for the same medical concept, such as in the case of a fractured vertebra, which can be expressed as “fractured spinous process of the first lumbar vertebra” or “fracture of the processus spinosus L1.” SNOMED translates terms such as these into unique and internationally uniform codes. It can even convert key information from free text (e.g., medical reports) into discrete machine-readable units. 

SNOMED is also being used to code and track Covid-19 cases

Sylvia Thun, Professor for Information and Communications Technology in Healthcare and Director of the Core Unit eHealth and Interoperability at the BIH, has been studying medical nomenclatures like SNOMED CT for over 15 years and is an internationally recognized expert on terminology standardization and harmonization. She believes the IT-compatible language presents great opportunities: “SNOMED CT will allow Germany to take a major leap forward in the digitalization of healthcare and ease collaboration among decision-makers in the health system. SNOMED is the basis for globally interoperable digital health applications, such as for allergies and rare diseases, but also for the current pandemic: To keep track of the number of coronavirus infections and Covid-19 cases, we need a system of documentation that is understood around the world.” Many countries are already using SNOMED to record coronavirus infections; Germany will soon follow.

Interoperability is key for rare diseases

Dr. Josef Schepers, from the BIH Core Unit eHealth and Interoperability, is head of the exemplary use case “Collaboration on Rare Diseases” (CORD-MI), a project involving all four consortia of the Medical Informatics Initiative. In this medical field in particular, it is tremendously important that physicians from different institutions and different countries understand one another and that patient data can be shared in accordance with data protection regulations. “Digital networking can be lifesaving,” Schepers stresses. “Especially for medical diagnoses that occur perhaps just 100 times throughout Germany.”

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About the Berlin Institute of Health (BIH)

The Berlin Institute of Health (BIH) is a biomedical research institution focusing on translational research and precision medicine. The BIH is dedicated to improving the prediction in progressive diseases and developing advanced therapies for unmet medical needs in order to improve patients’ health and quality of life. The Institute is committed to providing research solutions and innovation enabling value-based, personalized healthcare. The BIH is funded 90% by the Federal Ministry of Education and Research (BMBF) and 10% by the State of Berlin. The two founding institutions, Charité – Universitätsmedizin Berlin and Max Delbrück Center for Molecular Medicine in the Helmholtz Association (MDC), are independent, member entities within the BIH.

About the Medical Informatics Initiative (MII)

CORD-MI is a cross-consortia use case of the Medical Informatics Initiative (MII) that aims to improve the possibilities for medical research and patient care in the field of rare diseases. The MII seeks to enable data from healthcare contexts and from clinical and biomedical research to be used and exchanged across multiple entities and sites – transcending the boundaries of individual institutions and geographical locations. The Federal Ministry of Education and Research (BMBF) is providing a total of around €160 million for this initiative through 2021. All of Germany’s university hospitals have joined forces with research institutions, businesses, health insurers, and patient advocacy groups in four consortia – DIFUTURE, HiGHmed, MIRACUM, and SMITH to create a framework across more than 30 sites that harnesses research findings to the direct benefit of patients. Data protection and data security are given the highest priority.