In Austria, around 20,000 deaths per year can be attributed to cancer. Which therapies the patients receive, how they respond to medication and how the disease progresses is documented decentrally in the federal states. However, the introduction of an Austria-wide progress-related cancer register could significantly improve the treatment of patients and also serve research, said the oncologist Birgit Grünberger at a press conference in Vienna.
The oncological information system used in Lower Austria could serve as a model, said Grünberger, head of the oncological department of the state hospital in Wiener Neustadt: “The system is used by more than 1,000 doctors and enables us to collect data on treatment and the course of the disease record and thus adapt and improve the therapies of the patients,” said the doctor.
In the meantime, 65,000 cases have been chronologically documented there, and 9,000 new cases are added every year. The collected disease-related data is very extensive: “All findings, all results of examinations, all medications that the patient takes, all his allergies and other diseases are recorded.” As a result, the data on the use of therapeutics has improved significantly, said the doctor. “We have a clearer picture of the course and prognosis of the cancer.”
The data regarding the corona pandemic is also of interest to the medical profession: “We see whether patients come to the hospital sooner or later and see how different therapies have different effects.” In addition, thanks to the register, the exchange and cooperation between the treating physicians has improved, said Grünberger.
With regard to a national tumor register, however, legal adjustments are necessary, said Thomas Czypionka from the Institute for Advanced Studies (IHS). “The objective must also be clear. Of course, I can collect all sorts of data, but that may not make sense and it may also be too much effort.” From a data law perspective, however, such a register is quite feasible, as can be seen from the examples of Germany and Belgium, according to the expert.
The involvement of those affected is also important for the success of the database, said Czypionka: “Voluntariness – and if people see it as sensible – always increases the quality of the data.” The costs for such a register should not be underestimated – the expert expects “millions just for the administration of the database and ongoing quality assurance”.