Swiss Cancer Registry Software Project Abandoned After Costly Investment

After a lengthy development period spanning nine years and costing approximately 16 million Swiss francs, the Swiss Federal Authorities have officially halted the development of a software solution intended for cancer registration.

Initially, the Swiss government was optimistic about the project aimed at automating the collection of cancer case data from cantonal cancer registries for centralized evaluation. However, the initiative has ultimately proven unsuccessful, leaving officials to return to the starting point where the project first commenced.

The National Cancer Registration Office (NKRS) sought to obtain standardized data sets from the cantonal cancer registries to facilitate national assessments. Unfortunately, it appears that the implementation did not fulfill its intended purpose.

In 2018, the Federal Council stated that "all necessary measures had been taken to ensure the quality of the IT solution" during the project's organization. This was halfway through the timeline following the enactment of a new cancer registration law (KRG) in 2016, which came into force in January 2020. The Federal Office of Public Health (BAG) and the Federal Office of Information Technology (BIT) were tasked with developing the IT architecture necessary for nationwide cancer case reporting.

As reported recently by Swiss Radio and Television (SRF), the Federal Authorities have now decided to cease further development of the KRG IT architecture. Since 2020, cantonal cancer registries have been required to either maintain their own registries or join existing ones, with the first cancer registries established in 1969.

Currently, there are 13 cantonal or regional cancer registries, as well as a children's cancer registry, which collect cancer case data from hospitals, medical practices, and laboratories. However, the BAG has noted that these data are often not standardized and may be submitted in various formats, such as PDFs or Excel files. Consequently, cantonal registries are required to manually digitize this information according to national guidelines.

The BAG explained that the legal framework allows for heterogeneity among the registries, leading to varying requirements for software among the cantonal and regional cancer registries. Despite the federal government leading the project involving multiple stakeholders, the development process revealed the challenges in achieving a seamless, fully digitized solution due to differences in coding, registration methods, and data scope.

The intended software was designed to adhere to the so-called 'once-only principle,' which aimed to ensure that all data would only need to be captured once and could flow seamlessly into other systems. However, the Federal Office of Information Technology has acknowledged that this goal was not realized, leading to the decision to discontinue the software's further development.

As a transitional solution, data currently being processed will be migrated to existing cantonal software systems to ensure that all cancer cases continue to be documented. This is particularly crucial for the children's cancer registry, which has been the only registry utilizing the newly developed software for pediatric cancer cases.

In a statement, the head of the BAG's communication section noted the need for an analysis of the technical factors that contributed to the unsatisfactory performance of the system. The BAG is committed to learning from the project's shortcomings moving forward.

Despite these efforts, the financial implications of the project's failure are significant, with the Federal Office of Health confirming that the total development costs reached around 16 million Swiss francs, encompassing all conceptual, developmental, and management services associated with the initiative.