Funding of the Czech National Cancer Registry has been negotiated over and over again

The Czech National Cancer Registry (CNCR) contains data on 1.6 million cancer cases described by 30 parameters, including tumour stage and patient's survival. The registry was established in 1977, and although records were entered with varying degrees of accuracy at times, nowadays it presents a unique dataset which can be the envy of oncologists in most developed countries.

In fact, CNCR is not just a theoretical issue which would be only convenient to introduce presentations at cancer conferences. Data from the registry is employed in routine clinical practice, and therefore brings benefit to all cancer patients in the Czech Republic. Moreover, the potential of CNCR employment has not been fulfilled yet. CNCR can be used to project cancer care needs very exactly, including those in individual regions. For several years now, predictions have been made on the number of cancer patients with specific diagnosis and tumour stage, including predictions for individual regions of the Czech Republic. The registry is essential to target screening programmes properly: with the help of CNCR, target population and screening intervals can be defined more precisely. Data from CNCR can tell us where (and possibly why) cancer patients present too late at GP practices. "Last but not least, it is self-reflection tool for us, oncologists," added Professor Jitka Abrahamova, President of the CNCR Council.

The collection and administration of cancer data is a very complex task, and one cannot rely just on the enthusiasm and good will of all interested parties. Money is needed here, too. The Report on Malignant Neoplasm is an obligatory document to be filled by the doctors, and this is funded from the public health insurance. However, subsequent validation, consolidation and retrospective search of necessary data is needed, including the correlation with the Death Records Database. Collection of cancer data would be meaningless without this further processing. "Data validation must be done by trained and experienced professionals – doctors and nurses. It is a very responsible and skilled work, which cannot be done by any secretary or a computer programme," pointed out Prof Abrahamova.

Since 1989, the maintenance of the Czech National Cancer Registry has been funded by the Czech Health Ministry, which provided 10.5 to 16 million CZK per year. In 2007, however, the authorities said that such subsidy was unsystemic and that the registry should be funded in a different manner henceforth. Nevertheless, definitive solution has not been agreed on yet – and this money must be re-negotiated every year. Year 2010 was no exception: on the contrary, the negotiation was harder than ever before. "I even made Mr Janota, the finance minister at that time, talk to Mrs Juraskova, the then health minister. We finally obtained 5 million CZK, half of the promised amount. But it was remitted only now, in early 2011. The other half must be re-negotiated with the new leadership of the Health Ministry. Negotiations on the same subject over and over again are exhausting for everyone. We need to resolve this issue in a conceptual manner," said Prof Abrahamova.

The quality of CNCR is therefore at risk due to the persisting uncertainty. "Nobody will see immediately (or even two months later) that the CNCR does not work as it should. And that is all the more dangerous: in several years, cancer incidence will seem to decrease, which will impact directly on the assessment and optimisation of cancer care distribution, including cancer care planning. Health care quality assessment and cost-effectiveness will be increasingly important in the years to come. I don't know how the Czech oncology and health care in general would address these issues without CNCR," said Dr Ladislav Dusek, director of the Institute of Biostatistics and Analyses at Masaryk University in Brno.

Fusion of CNCR data and databases of health insurance companies could lead to an even more meaningful employment of data. Such interconnection makes it possible to analyse data on treatment options and treatment costs with regard to tumour stages and TNM classification. In fact, this approach will provide a comprehensive overview of not only pharmacotherapy, but also surgery and radiation therapy. Link between CNCR and hospital information systems is another step forward. This project has been successfully accomplished in a number of Czech health care facilities.

Keywords: Czech National Cancer Registry, funding, Institute of Biostatistics and Analyses

24. 1. 2011 Medical Tribune

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