Cancer is a widespread disease: Every year, some 500,000 people are diagnosed with cancer across Germany and almost half of these people die from the disease. But in order to be able to fight this disease through research, treatment, diagnostics and prevention, much more information is needed: Who gets what type of cancer? At what stage is the cancer diagnosed? Who survives and for how long? After what treatment? Are there regional differences? At what age do most cancer cases occur? Much of these data are collected, but each federal state usually collects them separately and each hospital and each oncologist and pathologist have different systems, and different standards are often used for diagnosing and documenting cases. The uniform basic oncological data set of the Association of German Tumor Centers (ADT) and the Association of Population-based Cancer Registries in Germany (GEKID) is an important data exchange standard for cancer registries, but does not meet all the requirements of oncologists for precise oncological documentation. “It is therefore difficult to draw the right conclusions from the different data sources,” explains Professor Sylvia Thun. “In order get the most benefit from them, we need to ensure that data from individual cancer registries and oncology patient records are comparable and shareable.”
Standards for cancer data
Thun’s expertise is in the field of data interoperability. By this she means certain standards by which data are collected so that they can communicate with each other and be analyzed. “If everyone records their data in their own software language and terminology, communication between machines and people is not possible,” she says, summing up the problem. “Although you know roughly what has been documented, serious misunderstandings can still arise. We therefore need communication standards for cancer data,” explains Thun, a physician and digital expert. “Only then can we identify, for example, at which stages certain types of cancer are discovered and possibly introduce here more effective early detection strategies. Or if a certain cancer occurs much more frequently or much less frequently in one area than another, we can search for the causes.”
Digitalization could help
Another problem is the time lag in reporting. The German federal states often report cancer data to the RKI months after the fact. “Digitalization could help here,” Thun is convinced. “This would mean data would only have to be entered once, for example, in the patient’s health record, and they would go directly to the RKI as well.” “Germany’s hospitals do not yet have a high level of digital maturity,” says Thun, “scoring on average 33 points on a scale of 100. There’s still much room for improvement, and that would also help with cancer data recording.”
A pioneer for other registries?
Professor Christopher Baum, Chair of the BIH Board of Directors and Chief Translational Research Officer of Charité – Universitätsmedizin Berlin, believes Sylvia Thun will be able to make a hugely important contribution to the Scientific Advisory Board of the German Centre for Cancer Registry Data: “Cancer registries certainly play a pioneering role in other registry work, especially since cancer affects all areas of medicine and we have not been able to effectively integrate data despite years of groundwork to establish cancer registries.”
After heading the national standards developing organizations IHE and HL7 Germany for many years, Thun currently also chairs the German umbrella organization for IT standards in healthcare (SITiG) and serves as an expert to the international standards bodies DIN, CEN and ISO.
Further information:
Sylvia Thun is setting standards for medical data:
https://www.bihealth.org/en/notices/sylvia-thun-is-setting-standards-for-medical-data
Core Unit Interoperability at the BIH:
https://www.bihealth.org/en/research/scientific-infrastructure/core-facilities/interoperability/home
In a BIH Podcast, Sylvia Thun explains what interoperability is (German only):
https://www.bihealth.org/de/aktuell/was-ist-interoperabilitaet
Sylvia Thun receives German Cross of Merit
https://www.bihealth.org/en/notices/sylvia-thun-receives-german-cross-of-merit