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The first statistics

The Cancer Registry Committee, set up for statistical research on cancer, started its work quickly under the leadership of its Chair, Atle M. Mali. The committee met four times during the autumn of 1952 and agreed on practical arrangements and guidelines for its activities.

The Office of Cancer Statistics was initially located in the joint financial office of the CSF at Mikonkatu 7, where it was considered to have better operating conditions than at the main CSF office of the organisations at the Finnish Institute of Occupational Health in Haartmaninkatu, “far away in Taka-Töölö”, actually even further away in Meilahti in the northwest of the city. Eeva-Liisa Karvonen, who had previously worked as a registrar for the CSF, was appointed as the office’s registrar, meaning the processor of the accumulated research data, because she was considered well suited to the task as a nurse. Karvonen thus became the Cancer Registry’s first employee.

The Cancer Registry’s initial collaborators were the doctors, hospitals and pathology laboratories as well as the National Board of Health and the Central Office of Statistics. Doctors, hospitals and laboratories were the senders of the data, the National Board of Health was the necessary authority for the operation, transmitting the cancer data to the Cancer Registry, and the Central Office of Statistics provided the data for cases where cancer was mentioned on death certificates.

Saxén’s patient cards were sent to the recipients with the request that they be carefully filled in and sent to the National Board of Health. Private doctors were asked to return the cards in July 1953 and January 1954. Hospitals and pathology laboratories could arrange for the cards to be returned in the manner suggested by the Chief Medical Officer but during January 1954. To facilitate practical arrangements it was decided to pay a fee of FIM 50 marks for each notification.

The reporting of cancer cases went better than expected, with 9 000 cases reported by mid-September 1953. In order to speed up their transmission, the National Board of Health issued a circular on 12 December 1952 calling on hospitals and doctors in the country to report any cases of cancer that came to their attention.

The Cancer Registry Committee received the 1953 cancer notifications at the beginning of the following year. Eeva-Liisa Karvonen arranged the cards in cardboard boxes on the floor of the registry office, and the actual statistical work was done on the side by Aino Korpela, a statistician at the Central Office of Statistics. Korpela brought the idea of manually comparing the death certificate data from the main office with the cancer reports received by the registry from her actual job.

Preliminary data on the statistics was published in the April 1954 issue of the Finnish Medical Journal (Suomen Lääkärilehti). This was done, at least in part, apparently to demonstrate to the medical community the usefulness of cancer reports for research and thus to increase the willingness to send them. After the final results had been completed during July, Erkki Saxén presented a review of the Cancer Registry’s activities and achievements to the CSF board in early November. The name Cancer Registry had been introduced in the summer of 1954, whereas the author of the article in the Medical Journal had still referred to Cancer Statistics.

According to Saxén, 9 208 new cases of cancer were diagnosed in Finland in 1953, of which only three quarters were identified from reports to the Cancer Registry and one quarter from death certificates. Another problem was that there were many duplicate cases among the notifications, which were difficult to trace. Both sexes were equally affected by cancer, but men died of cancer at a much higher rate of 163 per 100 000 inhabitants, compared with 141 for women. The difference was at least partly due to the fact that a large proportion of female cancers were breast and genital cancers, which were usually diagnosed at an early stage and had relatively good treatment outcomes, according to Saxén. In men, lung cancer accounted for a very large proportion of tumours and the treatment options were fairly poor.

The CSF board expressed its thanks to the Cancer Registry for its commendable work, which soon gained international recognition when Erkki Saxén presented the results of the cancer statistics carried out in Finland at the congress of the International Society of Pathology, held in Washington in September 1954. The trip was due to the Statistics Committee’s good relations with the Chair of the society, Harold L. Stewart, Director of the NCI Pathology Laboratory, who had provided valuable advice on the development of its activities and had hoped that the committee would send a representative to explain Finland’s contribution to cancer statistics.

International attention increased the following year when Saxén’s paper “Report from the Finnish Cancer Registry” was published in a major Swiss medical journal. The Registry Committee had supported the publication to raise international awareness of its work, and Saxén himself was actively seeking to establish contacts with international cancer researchers and organisations.

Difficult first years

With the completion of the first set of statistics, the CSF board decided to continue the statistical work. According to Saxén, this was because “the results obtained during one year, and especially during the first statistical year, must be viewed quite critically”. Only new cases detected each year gave a reliable picture of the prevalence of cancer and its development, and as the work continued, the scope for error was reduced. The difficulty in the early days was that death certificates showed the year of death, but not always when the cancer was diagnosed. Later, attention was paid to the time of cancer diagnosis.

A model for statistics was constantly sought from Denmark. Saxén had visited Johannes Clemmesen in Copenhagen in the summer of 1953, who had participated as an expert in the establishment of the Danish Cancer Registry, and who expressed his delight at the start of cancer statistics in Finland and gave advice on the work ahead. The following year, statistician Aino Korpela spent two weeks visiting the Danish Cancer Registry, and in June 1955 Saxén travelled again to Copenhagen for a meeting of the directors of the European Cancer Registries, where he had the opportunity to meet Clemmesen. Both internationally prominent cancer registry developers lived long and fruitful lives: Clemmesen died at the age of 102 on 20 December 2010 and Saxén at the age of 100 on 24 August 2021.

Based on the experience of the first year, the 1954 questionnaire was slightly modified to include questions about the patient’s treatment, when treatment was started and how widespread the disease had become at the time treatment began. Information was also requested on the nature of the treatment: whether it was radical or palliative, whether it involved surgery, radiotherapy, medical treatment or no treatment at all. Where possible, the diagnosis made on the basis of a microscopic examination of a tissue sample was to be indicated on the card.

Doctors, hospitals and pathology laboratories were asked to report all new cases of cancer and all deaths from cancer. Hospitals and private practitioners were still paid FIM 50 marks and pathology laboratories FIM 20 marks per notification. In 1954, the Cancer Registry received about 13 000 cancer notifications, followed by 11 000, 21 300 and 16 200 notifications respectively for the next three years. All these figures included patients reported from several sources, a problem which was overcome only in 1968 with the introduction of personal ID numbers throughout the country: the personal ID number laid the foundations for the development of epidemiological research. It made it possible to carry out various comparative studies on the cancer rates observed in a given group of people with the average cancer rates in a country or region as revealed by the Cancer Registry database.

The increase in the number of notification cards yielded abundant new information about cancer, but it also created practical problems. When the joint office and accounts of the CSF and the Cancer Foundation moved from Mikonkatu to the 167-square metre premises on the second floor of Liisankatu 21 B in early September 1954, the Cancer Registry moved there too. Although the cards could now be moved from cardboard boxes to filing boxes, the space reserved for the registry on the wall of one of the rooms was so small that the overcrowding hampered its operation. Although Karvonen was assisted by an office assistant in 1955, the preliminary results of the 1954 statistics could not be published until early 1956.

The CSF board was aware of the problem with the Cancer Registry, but before it could be solved, the whole registry had to be put on a sound footing. A memorandum adopted by the CSF in early March 1955 to guide their activities over the coming years stated that the Cancer Registry should be made a permanent part of the head office, as it was important that cancer statistics should be kept continuously in Finland. The current system, where statistical work was led by a broad-based Cancer Registry Committee, had proved to be flexible. Following the departure of its chair, Atle M. Mali, from the National Board of Health, it was important for its representativeness that a new member representing the Central Agency should be appointed. Paavo A. Kuusisto, Medical Counsellor, was invited by the Cancer Registry Committee.

As a small practical improvement, the memorandum suggested that office space of the CSF used for Board meetings should also be made into a special library where researchers could consult the material received by the CSF. This room could also be used for research by those who wished to make use of the material and expertise of the Cancer Registry. Their numbers began to increase in the mid-1950s.

The importance of statistics is understood

At its meeting on 18 November 1957, the CSF board discussed the future of the Cancer Registry after five years of operation. For the meeting, Atle M. Mali, Chairman of the Cancer Registry Committee, had prepared a memorandum on the options for developing the registry.

This stated that the medical community had always been positive about the Cancer Registry, with a good number of cancer cases being reported and other experiences being positive. Interest in the registry had also grown abroad, but now difficulties had been encountered. The large increase in the number of notifications received meant that scientific processing was no longer possible due to limited staff and lack of space.

According to Mali, the situation was so difficult that it had become necessary to consider reorganising the registry. He proposed the following options for consideration:

  • The Cancer Registry would be expanded by hiring a head of statistics (regular, day-to-day work) and one new accounting assistant, and by the office space available to the registry being increased accordingly.
  • The way the registry works would be changed. The collection of notifications would be temporarily suspended. The five years of data then being compiled would be processed in an appropriate manner and limited specialised surveys would be carried out.

The first option was supported by the following arguments. The continuous collection of new cancer notifications was essential for the overall planning of the medical treatment management. Only in this way could the need for specialised treatment places, hospitals and doctors in different parts of the country be identified. Once established, the machinery would be kept in operation, the vigilance of doctors and medical staff would be maintained and the interest of the authorities in the cancer issue maintained. And only data collected by the Cancer Registry could identify possible “unforeseen factors” that would cause changes in the cancer situation.

The latter option was supported by the following. The data already collected made it possible to get a clear idea of the current prevalence of cancer. There was no need for continuous statistics to determine the prevalence of cancer alone, as cancer cannot be compared with infectious diseases, whose prevalence could vary rapidly from one year to the next. Five years of continuous registration, for example every 10 years, could therefore be sufficient as a basis for specialised research.

Since the potential for error was quite high in a nationwide statistical survey, it could be asked whether it would decrease significantly over the years and as the statistical material grew. Instead, according to Mali, it was clear that limited surveys of a representative population during the interim collection period could provide important additional information on new cancer cases. Special surveys could also be used to conduct various statistical studies related to the activities of the CSF, such as the already planned survey of the stages of cancer patients after the onset of symptoms and diagnosis of the disease.

After careful consideration of both options, the Cancer Registry Committee decided to recommend the first, which, if implemented, would mean that the Cancer Registry’s activities would have to be significantly expanded. As this would require additional funding, the immediate benefits of statistics for medical management planning should be brought to the attention of the authorities. The committee immediately entered into discussions with the National Board of Health and the Central Office of Statistics.

According to Mali, only after the expansion would the costs of the Cancer Registry reach the level reached in Denmark, a pioneer country in cancer registry activities, of around FIM 6.5 million a year. In Norway, the costs were even higher at around FIM 2.5 million. In addition, Mali could say that the Ministry of Education would contribute to the costs of the expansion. This was now certain, since the ministry had awarded the CSF a grant of FIM 1 million to support Cancer Registry’s scientific activities.
The Cancer Registry Committee proposed that the CSF board increase the Cancer Registry’s budget to 6.5 million marks per year and take urgent steps to expand its premises to 100 square metres.

After a favourable presentation by Niilo Voipio, the Board approved the proposal almost as it stood. It decided to continue and expand the activities of the Cancer Registry as proposed, and to secure this, to set aside an annual budget of FIM 6 000 000 for the Cancer Registry. The Board also approved the commissioning of special studies planned for 1958, but the implementation of these studies would not be decided until the next Board meetings. At the same meeting, the membership of the Cancer Registry Committee was extended to include Aino Korpela, Director of Statistics of the Cancer Registry, and Niilo Voipio, the Association’s agent.

The appointment of Niilo Voipio as a member of the Cancer Registry Committee confirmed that the registry had now gained another major influencer alongside Erkki Saxén. Voipio and Saxén were both born in 1921, and, united by their wartime frontline experience, they formed a lasting friendship that had a significant impact on the development of the Cancer Registry. Voipio had already supported the establishment and development of the registry as an agent of the CSF, and now, as a member of the committee, he was able to directly influence its activities. In both roles, he welcomed the funding of the Registry’s activities and advised on, among other things, the recruitment of its staff.

The support of the Secretaries General of the Finnish CSF has been crucial to the development and funding of the Cancer Registry. Niilo Voipio laid the foundations and practices for this, which his successors have also largely followed. This ensured that the CSF became a good home base for the Cancer Registry.

The positive decisions of the CSF’s Board of Directors did not remain just rhetoric, but led to practical results. The situation of the Cancer Registry eased at the end of 1958, when the CSF sold its office on the second floor of Liisankatu 21 and bought a much larger apartment on the fifth floor of the same building. When, at the beginning of 1959, after renovation and repair work, the CSF was able to move into the new office building, the working space of the Cancer Registry and, at the same time, its operating conditions improved considerably.

The expanded premises became necessary as the Cancer Registry’s staff grew. In addition to the part-time Chief Medical Officer Erkki Saxén and Office Manager Aino Korpela, the new premises employed four registry assistants, including former office assistant Eeva-Liisa Karvonen, and one accounting assistant. The strengthening of the Registry’s capacity meant that more attention could now be paid to developing the Cancer Registry’s research work.