Swiss cancer registry: Software ruin cost millions

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A few years ago, the Swiss federal authorities were still optimistic about a software solution for the nationwide recording of cancer cases. But now the plug has been pulled on the project, which cost many millions of francs. This means that we are back on the “go” – field, where it all began nine years ago.

The National Cancer Registration Service (NKRS) wanted to receive standardized, structured data records from the cantonal cancer registries in Switzerland in an automated process so that they could be evaluated centrally. In the end, this obviously didn't really work – it has to be stated so simply.

As recently as 2018, the Federal Council wrote: “As part of the project organization, all necessary measures were taken to ensure the quality of the IT solution.” This was halfway through the period when a new Cancer Registration Act (KRG) was passed in 2016 and came into force in January 2020. To support cancer registration, the Federal Office of Public Health (FOPH) and, on its behalf, the Federal Office of Information Technology (FOITT) began to develop the “KRG IT architecture” for nationwide registration. This solution includes the cancer registration software (RSW). As recently reported by Swiss Radio and Television (SRF), the federal authorities have now discontinued the further development of the KRG IT architecture.

Cancer registry mandatory since 2020

Cancer registries have existed at cantonal level since 1969, but the cantons have only been obliged to maintain a cancer registry or join an existing registry since 2020. Once a year, the decentrally registered data is forwarded from there to the National Cancer Registration Service (NKRS) for national analysis. There are currently 13 cantonal or regional cancer registries (CCR) and the Childhood Cancer Registry, which register cancer cases in Switzerland. The CCRs obtain the data for this from hospitals, surgeries and laboratories, which, according to the FOPH, are not available in standardized form, but as PDF or Excel files, for example. For the most part, the CCRs digitize this data again manually in accordance with uniform national specifications, explains the FOPH.

The FOPH told heise online: “The legal basis allows for heterogeneity among the registries, and the requirements of the cantonal or regional registries for the software are correspondingly heterogeneous.” To develop a software solution for national cancer registration, “the federal government also took the lead in the project, in which various stakeholders were involved”, said the FOPH. However, it obviously took time for the assembled stakeholders to find out that “seamless, media break-free recording in the sense of a fully digitized solution is not possible due to the types of recording described”.

“Once-only principle”

At the end of the day, it turned out that “due to the various differences, for example in the type of coding and registration”, as well as regarding divergent working methods or the scope of the registered data, today's cancer registration is correspondingly time-consuming and complex, and “a completely digital recording of the data is difficult to implement”. This is mainly because, according to the FOPH, the envisaged software solution should have complied with the so-called “once-only principle” to ensure “that all data only needs to be recorded once – and flows seamlessly into other systems”. However, the Federal Office of Information Technology apparently failed to achieve this. The Confederation has therefore decided not to further develop its cancer registration software.

As a transitional solution, the data already running on it will be migrated to the existing cantonal software solutions. This will ensure that all cancer cases continue to be recorded. This applies in particular to the Childhood Cancer Registry, which was the only cancer registry to register childhood cancer cases based on the new software developed to date. To ensure that cases continue to be registered, the data will be migrated to the NICERStat software used by cantonal cancer registries.

Analyses underway

Katrin Holenstein, Head of the Communications Section at the FOPH, drew an ambivalent conclusion in an interview with heise online: “We will now analyse in detail which technical factors led to the system not functioning satisfactorily so that we can draw appropriate lessons learned from the project. It is still too early for answers.”

However, the damage has been done, according to SRF, which first reported the case, as the federal authorities had been working on the software for nine years – and the damage is correspondingly extensive, according to SRF. The Federal Office of Public Health confirmed to the broadcaster: “The development costs amounted to around CHF 16 million. They include all design, development, and management services.”

(dahe)