When the Ministry of Social Affairs and Health decided in 2009, on the initiative of cancer organisations, that Finland needed a national cancer plan for 2010-20, it was clear that the conditions were excellent. This was ensured by the Cancer Registry, whose projections of the incidence of different cancers in 2020 also formed the basis for the assessment of treatment needs. As co-secretary of the working group, I was able to rely on the data provided by the registry, which showed a slight increase in the incidence of cancers, particularly in women, while the incidence of male cancers remained more or less unchanged. The cancer mortality rate was predicted to continue to fall, but the number of cancer cases continued to rise. The second part of the National Cancer Plan was published in 2014, covering the period up to 2025. The above example illustrates the expert work of the Cancer Registry. On the basis of continuous statistics, it is possible to quickly build up the information needed for health policy. It was this feature that I found particularly valuable as secretary general of the CSF. The time series produced by the registry formed the basis for the CSF’s work, while at the same time serving clinicians in their work. The highlight of the year was the regular publication of new data, which in my day was compiled into compact information packages in the Cancer in Finland publications. When I was chief medical officer of the CSF in the 1990s, I was particularly interested in the data on the links between smoking and cancer provided by the Cancer Registry, which was used both to support legislation and to promote health. At that time I also tried to get Cancer Registry researchers to confirm my belief that health promotion aimed at reducing UV exposure would have curbed the increase in melanoma incidence, but the epidemiologists were very cautious about this assumption. During my time as secretary general in the 2000s, the Cancer Registry was an independent part of the CSF, a research institute with experts in the field. With the registry always close at hand, its researchers could be consulted on issues of concern whenever the need arose. And there was quite a lot of it. Although I have a basic knowledge of epidemiology, I was constantly learning new things from the researchers at the registry. Many of the researchers knew how to tailor the content of the discussion so that the secretary general could still keep up. Even though there were internationally renowned researchers among them, they made sure that only the necessary amount of statistical terminology was used. During my time as Secretary General, the registry was headed by Professor Timo Hakulinen, whose extensive use of voice I became familiar with during my time as chief medical officer in the 1990s. Managing an expert organisation is a demanding job, but the Cancer Registry was effective because the administrative reforms made by Hakulinen were invariably well founded. The head of statistics was Professor Eero Pukkala, an innovative scientist who has sometimes been called Finland’s most quoted researcher. This may well be because the Cancer Registry statistics were used by all Finnish cancer researchers and by a great many international authors. Eero worked largely at home, visiting the workplace when necessary. It didn’t affect the workload, but there were a few discussions about it. Another innovator was Risto Sankila, the chief medical officer of the Cancer Registry, who, among other things, once presented the differences in survival rates of cancer patients in different university hospitals, causing quite a debate. The Mass Screening Registry is an independent unit within the Cancer Registry. It was headed for most of my time by Nea Malila, with Ahti Anttila, the director of research, working alongside her. A particular feature of the Mass Screening Registry is its longevity. The screening of cervical and breast cancer, which have proven successful by many measures, has been thoroughly investigated. The Finnish success story, cervical cancer screening, actually reduced the incidence of these cancers to a minimum. But this is not enough for screening research: it is essential to continuously monitor the whole screening process. The Mass Screening Registry cannot be spoken about without mentioning Matti Hakamaa, who is responsible for all Finnish cancer screenings. He retired, so to speak, in the early stages of my time as secretary general (my first public appearance in that position was to give Matti a medal of honour). In a way, retirement was an unremarkable event – the work continued with weekly visits to the registry. Hakama has been something of a mentor to me, and I have acted as opponent on a number of his students’ dissertations. It is clear that when the Cancer Registry has had a team of experts such as described above, its international demand has been considerable, both as a partner and at various world congresses. Many of its researchers also made occasional visits to the IARC in Lyon. Being on the board of the UICC gave me a good idea of the value of the Cancer Registry worldwide. The Nordic cancer registries have done a great deal of joint research, and as Secretary General I was often able to see how it was going. A striking example is the rare cancers study, where huge data sets allowed us to gain a better understanding of the diseases. The headache for the secretary general – as well as for the management of the Cancer Registry, of course – was funding from time to time. On the one hand, the Cancer Registry was a research institute run by the Cancer Societies, on the other, a national registry producer. Who should fund its activities or should it be publicly funded? Its researchers applied for grants in the same way as other cancer researchers. We felt it was very important for cancer organisations that the Cancer Registry was funded by the Cancer Foundation in order to maintain the autonomy of the research institution. However, as the registry served the public administration to the full, there was a debate about whether it should somehow be linked to the National Institute for Health and Welfare as the registry authority. This was not the case, and I am personally convinced that the Cancer Registry was more efficient as part of the Cancer Society than it would have been under government administration. Although there were occasional heated debates on the funding of the Cancer Registry within the Cancer Foundation board, no one disputed its expertise and the legitimacy of its funding. Of course, the researchers hoped that more resources would be devoted to other research, which is probably self-evident. One of the most interesting projects of my time as secretary-general was the evaluation of the cost of cancer, which was first carried out in 2004. Now the cost assessment was carried out in 2015. The same assumptions were then used to make a forecast for the National Cancer Plan for 2020, the first of its kind in Finland, in which the Cancer Registry and the University of Tampere collaborated with excellent results. The Nordic Cancer Union later commissioned a study comparing the costs of cancer in the Nordic countries. Since then, a model has been developed to calculate the costs and provide annual data on cancer costs. It could perhaps be said that the idea produced a body of research in which the Cancer Registry played an important role.
