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A statistical and epidemiological cancer research institute

The Cancer Registry had started out as a public health agency that collected cancer data to serve hospitals, doctors and politicians responsible for the development of the hospital system. However, Erkki Saxén had already stressed from the very beginning that the registry could only function well if it carried out research activities in addition to its own statistics. An effective fight against cancer required accurate data on the prevalence, incidence and changes in cancer in different regions and in different groups of people, but the data would be of no value as such if it was not used for health planning and if the underlying facts and hidden causal links were not investigated through statistical, clinical and experimental studies.

The extensive research projects of the early 1960s, mainly the NIH-funded International Survival Study and the WHO-supported Finland-Norway study, began to boost the status of the Cancer Registry as a research institution. Its research work was not confined to the registry staff, as from the mid-1950s it made its data available to other researchers. The first researcher to make use of the Registry’s data was Marja Koulumies, whose dissertation Cancer of the breast: a study based on cases seen at the Central Institute of Radiotherapy was published in 1956. Koulumies was followed four years later by Johanna Pernu with her doctoral thesis An epidemiological study on cancer of the digestive organs and respiratory system. A study based on 7078 cases.

Researchers’ interest in the Cancer Registry began to grow rapidly in the 1960s, when they realised that it brought a wealth of data to research that would otherwise have been almost impossible to obtain. Pekka Peltokallio, a sports physician, whose 1965 study Carcinoma of the colon. A clinical study of 603 patients was based not only on the data collected by the registry but also on the studies it conducted. In 1966 Hans-Erik Klintrup, in 1969 Heikki Salmela and Kalevi Lauslahti, and in 1970 four doctoral theses were published.

The growth of the Cancer Registry’s research activities was in danger of coming to a halt in the early 1970s due to a shortage of staff. In addition to the academic staff – part-time Erkki Saxén, Statistics Director Matti Hakama, part-time physician Kimmo Koskenvuo and actuary Marja Lehtonen – there were only nine office assistants working at the registry. When Koskenvuo eventually resigned at the beginning of March 1971, Matti J. T. Aro, a medical licentiate, was appointed as the registry’s physician, whose scope of duties was quite extensive for one person to handle. He was responsible for coding the more than 50 000 notification cards sent to the Cancer Registry, for routine work and research for the registry, and also act as assistant to the CSF and the Cancer Foundation’s head of education.

The situation became even worse on 1 July 1971, when Matti Hakama requested to be relieved from the position of the registry’s head of statistics after being appointed Assistant Professor of Biometry at the University of Helsinki Medical Faculty. The joint committee of the boards of the organisations making up the CSF agreed to the request, but asked Hakama to serve as part-time director of the Mass Screening Registry for the time being. Saxén understood best that the registry was largely Hakama’s creation, so it would be very difficult to find someone able to continue his work. He therefore agreed with Hakama that he would act as a consultant statistician to the registry for the time being, without any further remuneration, until a mutually satisfactory solution could be found.

The CSF boards now realised that making the upgrading the Cancer Registry would not be possible without increasing its staff. When the Finnish Lions League’s Red Feather fundraiser for cancer work gave the CSF the opportunity to enhance scientific research, the Cancer Registry’s position was also strengthened. In 1972, it was transferred to the Cancer Research Foundation and new posts of Director and Chief Medical Officer of the Mass Screening Registry were created. At the same time, on Saxén’s proposal, the name was changed to Statistical and Epidemiological Institute for Cancer Research.

According to Saxén, the decision highlighted the fact that, in addition to collecting cancer data, the Cancer Registry operated as a scientific research institute that sought to understand not only the prevalence of cancer and changes in cancer but also the factors influencing cancer incidence at the population level. The aim of this research was to improve cancer treatment outcomes, to prevent cancer and ultimately to eradicate the disease. The registry data made it possible to study cancer-related issues at population level, i.e. to carry out epidemiological research, which was already represented by the Norway-Finland Lung Cancer Project.

After Matti Hakama received the expected appointment as the part-time director of the Mass Screening Registry, Timo Hakulinen was appointed as the new Director of Statistics on the proposal of the registry’s committee, starting on 5 June 1972. He had heard about the Cancer Registry during a laudatur university course in biometrics given by Hakama and decided to apply for a position he considered important. His appointment was not a dead cert, as another qualified candidate, Markku Nurminen, who went on to enjoy a distinguished career at the Institute of Occupational Health, also applied for the post.

As director of statistics, Hakulinen was responsible for the statistical methods and reliability of surveys and studies and for developing methodology, but he also had to supervise the staff in terms of personnel management and budgeting and later, increasingly, the legal requirements for operations, both nationally and internationally. It soon involved the planning and launching of studies, grant applications, scientific training and future orientation of the field.

Matti J. T. Aro, who had worked as a physician, was appointed as the chief medical officer, but he left the Cancer Registry already at the end of August. Lyly Teppo, a Licentiate of Medicine, whom Saxén knew thanks to joint meetings at the University of Helsinki’s II and III Pathology Departments and who was working on his doctoral thesis under the supervision of Saxén’s brother Lauri. Teppo was responsible for the medical operations of the registry, including the coding of the registry cards.

When Tepo and Hakulinen joined Saxén, Hakama and Lehtonen as colleagues in the Cancer Registry, a core team was assembled, which, after Eero Pukkala joined in 1975, was to lead the registry for 40 years, until the 2010s. Saxén served for 36 years, Hakama 43, Teppo 29, Hakulinen 40, Pukkala 45 and Lehtonen 36. In addition to the managers, many of the staff also had long careers at the Cancer Registry, evidence that the staff were both competent, motivated and enjoyed their work.

According to Matti Hakama, Saxén managed the registry with the same precision and determination as he did at the university’s pathology department. He gave researchers freedom and time for their own research, emphasised the quality of the research and made sure that external research did not interfere with the registry’s own research. He was ably assisted in this by Marja Lehtonen, the registry’s actuary, who kept a record of how things were progressing as planned.

In practice, Saxén carried out the duties of the director of the Cancer Registry at the Wednesday afternoon meetings, where the entire Registry brain trust was present, namely Saxén, the director of the Mass Screening Registry Hakama, Teppo, who was responsible for medical issues, statistics director Hakulinen, actuary Lehtonen and Pukkala, who had been mainly responsible for the development of the ADP since 1975. The meetings, which lasted a couple of hours, usually proceeded according to the agenda drawn up by Hakulinen, with each participant making a brief presentation in his or her area of expertise for information and decision-making. As there were numerous research tasks at different stages, project lists were used at the meetings. These were marked with the name of the person responsible for each item and the stage the task was at, followed by a code:

J = Continuous operation
K = Ongoing project
T = Upcoming project
P = Project in progress
O = Pending project
U = Overlooked

The brisk pace was explained by Saxén’s preference for ready-made proposals rather than lengthy discussions as the basis for decisions. His management style was based on delegating tasks and setting clear objectives. And although his own scientific interests were mainly in the field of pathology, he understood the importance of statistical research and felt that an epidemiological institute had to be multidisciplinary to be successful.

The core strength of the Cancer Registry was its team of medical, statistical and data processing experts working closely together. Despite his authoritarian style, Saxénin was a natural communicator, willing to talk to young researchers and confident in their abilities. Hakama, Hakulinen and Pukkala were only in their twenties when they joined the Cancer Registry.

Following Saxén’s example, the members of this core group attended to enhancing their scientific competence by continuing their research up to doctoral level and by publishing extensively thereafter. Matti Hakama’s doctoral thesis Age-adjustment of incidence rates in cancer epidemiology was published in 1970. Lyly Teppo published his thesis on testicular cancer in Finland in 1973 and Timo Hakulinen’s thesis on cancer survival rates On long-term relative survival rates appeared in 1977. Eero Pukkala, the youngest of the original group, completed his thesis Cancer risk by social class and occupation: a survey of 109 000 cancer cases among Finns of working age in 1995.

In addition to publishing high quality scientific articles, Saxén, like his brother Lauri, also supported the dissemination of research. In 1982, the Cancer Registry published the first Cancer in Finland report, by Eero Pukkala, Esa Läärä and Arja Rimpelä, which aimed to provide easily understandable statistical information on the causes and prognosis of cancer. Saxén’s sense of humour is shown by the fact that he called the team behind the Cancer Registry the “junior league” and the book itself a “children’s book”. Be that as it may, the young researchers knew what they were doing, the report gained international attention and many other countries started to publish similar reports. By 2011, 13 revised editions of the work had appeared (more than 100 000 copies in total), until the publication of the data went online.

In spring 1975, the responsibility for maintaining the Cancer Registry was transferred from the Cancer Research Foundation back to the CSF. The transfer was linked to the problems caused by the severe economic recession and the need to ensure continuity of funding through the RAY in a situation where the course of government funding for scientific research was dominated by priority thinking. Following a decision by the Science Policy Council in the early 1970s, one of the priorities for research had become research into public health problems. Although cancer was a definite public health problem, it was decided to concentrate funding on cardiovascular diseases. The relative proportion of deaths caused by cardiovascular diseases had already started to fall, but top researchers in the field, such as Martti J. Karvonen and Esko Nikkilä, were better known than cancer researchers working on basic research.

The solution may also have been motivated by the desire of the CSF to rationalise its service functions so that they could be put under public funding in the future without disruption. This tactic had worked well during the 20th century, when many of the activities developed by foundations as public utilities had been transferred to public funding. However, for the CSF this was only partially successful and the situation deteriorated further in the 2000s, when the state no longer took over public funding for forms of support that had developed based on private funding.

The transfer proved to be short-lived, however, as in 1981 the financial running of the Cancer Registry was returned to the Cancer Research Foundation. As a result, the Association transferred the RAY grant it had received for maintaining the registry to the foundation.

In December the same year, the Finnish Cancer Society entered into an agreement with the National Board of Health for the maintenance of the Cancer Registry, under which the former would submit cancer data to the Cancer Registry, but this data would remain its property. The Cancer Registry was thus part of the official statistics and official activities of the Finnish authorities, but its research was a private third sector activity.

The name of the registry, adopted in 1979, was now fixed as the Cancer Statistics of the National Board of Health. According to the agreement, the management team of the Cancer Registry was established in 1982. It consisted of two representatives from the National Board of Health and three from the CSF. The division of labour between this management group and the Cancer Registry committee took shape in such a way that
the management team considered the basic and administrative issues of the Cancer Registry while, on the other hand, the Cancer Registry committee supervised the operation of the entire registry and dealt with practical registration, research programmes and the budget.

Main lines of research

Erkki Saxén’s aim was to develop the Cancer Registry into a top-level research institute, which meant that its research results had to be significant worldwide. The conditions for achieving this goal were created by Statistics Finland’s (until 1971 the Central Office of Statistics) mortality register and the Cancer Registry’s cancer database, which made Finland one of the few countries where it was possible to reliably and comprehensively study cancer-related issues.

The number of staff and the number of studies published by the Cancer Registry grew considerably from 1954 onwards. As a result, the registry quickly achieved a prestigious position in the field of epidemiological and statistical research on cancer. Under Saxén’s leadership in the 1970s, research continued on the role of pulmonary tuberculosis and cigarette smoking in the development of lung cancer and on the factors influencing the survival of cancer patients. Statistical studies were carried out on the incidence of new cases of cancer, the causative factors of cancers, cancer mortality and survival following cancer diagnosis.

The biggest international success was the research by Timo Hakulinen, Director of Statistics at the Cancer Registry, on cancer survival rates. In 1988 alone, the registry organised two courses on methods developed for the statistical evaluation of relative survival rates for cancer patients, which attracted participants from 13 countries.

Timo Hakulinen: Assessing patients’ survival

One of the main lines of research of the Cancer Registry was epidemiological research on the causes of cancer. Often, the first group of people, or cohort, exposed to the factor under investigation was identified, which was monitored to estimate both the total number of deaths and the number of cancer cases that occurred. From the registry’s national or regional incidence rates, incidence ratios, i.e. the expected number of cancer cases in the study cohort, could then be calculated and compared with the number of cases detected.

Combining occupational and social status data from census data with Cancer Registry data proved to be a fruitful research method. From this data, occupational and social group-specific incidence rates were calculated, which provided an indication of carcinogenic exposures due to the occupational and living environment. Examples of groups of people for whom the occupational cancer risk was estimated were workers in the metal, glass wool and rubber industries, oil refining, chemical woodworking and chipboard industries, and those working with water-based toxins. The studies found that there are some work-related cancers, but they do not differ in terms of the course of disease or their pathological features from other similar cancers.

The prevalence of many cancers varied among social groups, as the underlying factors were very different for different cancers. Eero Pukkala established an international career as a researcher on occupational cancers. One of his milestones in this area was a series of studies on the cancer risk of airline staff, which started in 1995 and brought the issue to the attention of the public for the first time.

Studies initiated by the International Agency for Research on Cancer (IARC) in Lyon on the link between alcohol and cancer, and in particular on the risk of cancer from the living environment, have long been an important part of the Cancer Registry’s research work. Such studies, including on the possible cancer risk from chlorophenol exposure in Kärkölkä, were part of the case-control studies that were possible with the data collected by the Cancer Registry. The assessment of the cancer risk for nuclear power plant workers and people living near power lines and the link between drinking water quality and cancer risk also fell into this category.

In the mid-1980s, the Cancer Registry joined a large international study led by the IARC on the impact of cancer treatment (radiotherapy, cytostatics) on the incidence of new primary cancers. The study focused on patients who had received radiotherapy (cervical and endometrial cancer) or cytostatic therapy (Hodgkin’s lymphoma, testicular and ovarian cancer) for cancer.

Major projects initiated by the Cancer Registry in the 1980s included studies with the Research Institute for Social Security of the Social Insurance Institution (Kela), the University of Tampere and Oxford University. The aim of the large-scale study, which lasted several years, was to determine the role of biochemical constituents, antibodies and markers in blood as risk factors for cancer and as tools for early diagnosis.

The study can be seen as the beginning of today’s biobanking research, which has eventually been transformed into genetic research. One of its key leaders was an English epidemiologist, Professor Richard Peto of Oxford University, who was elected in 2000 as a foreign academician of the Academy of Finland.

A work environment survey was carried out in cooperation with the Nordic cancer registries, as well as research on the incidence of thyroid cancer, testicular cancer and melanoma in the Nordic countries. The Cancer Registry was commissioned by the WHO to study the prevalence of eye cancer around the globe and participated in studies on thyroid tumours and breast and genital cancer funded by the International Union against Cancer (UICC).

Cohort studies on cancer risk in exposed population groups were carried out by the Cancer Registry in collaboration with other research institutes, such as the Institute of Occupational Health and the Research Institute for Social Security of Kela. It was also involved in the 1984-93 SETTI study, a collaboration between the National Institutes of Health and the US NCI. This was a randomised cancer prevention trial to investigate the effect of vitamins A and E on cancer risk in the male smoking population. Nea Malila started her research career as a SETTI researcher between 1988 and 2001. Her book Antioxidant vitamins and colorectal neoplasms in different study designs was published in 2000.

Eero Pukkala: Tobacco and the work environment as causes of cancer

For the purposes of health care planning, the Cancer Registry carried out studies on the risk of cancer in Finns in the coming decades. These were published in WHO books of guidelines, and the Cancer Registry was actively involved in the development of the organisation’s health forecasting methods and their applications. Subsequently, the registry’s researchers developed projections of cancer incidence and mortality and provided estimates of factors that might influence future trends.

The activities of the Mass Screening Registry, led by Matti Hakama, focused on the development of methods for evaluating mass screening for the detection of pre-cancerous stages of cervical cancer and early breast cancer, and on a basic epidemiological survey based on the results of more than 400 000 women screened by the CSF since 1963.

The Mass Screening Registry’s activities faced uncertainty in 1974, when the CSF had to consider downsizing due to financial constraints. One possible cost-saving measure was to abolish the Mass Screening Registry and replace it with a mass screening services body to be set up at the CSF’s headquarters. During the discussion on this, Saxén pointed out that the Mass Screening Registry was also responsible for scientific research into the impacts of mass screening. This had been considered so important that in 1970 the Cancer Research Foundation had awarded a large grant to a research team led by Hakama for this very purpose.

The CSF’s Board decided to split the mass screening activity into two parts. At the beginning of 1975, the service activities were transferred directly to the Central Office of the CSF. The Mass Screening Registry was given the task of providing municipalities with the lists and invitation letters required for mass screening, as well as the evaluation, research and analysis of screening results. Hakama’s distinction as a researcher was attested to by his receiving the Edgar Gentilli Prize in 1982 for his article Epidemiological evidence for two components of cervical cancer, published the previous year.

After 1975, the research activities of the Mass Screening Registry focused on the natural history of cervical cancer, the possibilities of risk group screening and the link between cervical electrocautery and cancer risk. The long-term aim was to measure the effectiveness of screening.

In the early 1980s, the Finnish Cancer Association started to organise pilot activities to launch screening based on mammography, meaning breast X-ray examination.

The Mass Screening Registry was involved in both the planning and the practical organisation of the experiment and published the first estimates of the significance of the findings. Finland was the first country in the world to start nationwide, organised breast cancer screening, in 1987. Municipalities could organise screening either entirely or partly on their own or buy the service from an external provider approved by a central hospital.

However, the pathological tasks (in practice, the examination of a fine needle aspiration biopsy) were limited so that the external service providers could only be the Finnish Cancer Society or Oy Yleisröntgen Ab.

The Mass Screening Registry started to provide municipalities with breast cancer screening referral data and began to develop a national breast cancer screening screening card. This was not possible with the previous resources, as Hakama could only devote part of one day a week to the Registry’s work, while the rest of the staff consisted of clerical secretaries. The CSF board approved Hakama’s proposal to create the post of office manager for the Mass Screening Registry. Kirsti Louhivuori, a BPhil, took over the day-to-day management of the Registry in 1987. As the number of screenings increased, the following year a second recorder was appointed to the Mass Screening Registry.

In 1988, Hakama started to renew the data system of the Mass Screening Registry with the Finnish State Computer Centre, as a new system was needed for the mammography screening system. The reform facilitated the call system for both cervical and breast cancer screening and also helped to produce national and regional mass screening statistics and data for evaluation.

The collaboration between Saxén and the young researchers showed that it is good to have researchers of different ages in a research team. Saxén acted as a scientific mentor for the younger folk, opening up avenues for postgraduate studies and international positions, but also reinforced his understanding of the importance of statistics in cancer research. At the same time, the public health side of the registry’s research activities was strengthened due to Hakama’s evaluations of cancer screenings and Hakulinen’s research on cancer survival.

Expanding services, training and publishing activities

From the outset, the Cancer Registry sought to be branded as an institution that served the entire Finnish health care system, including the state administration, hospitals, laboratories, doctors and researchers. It published registration results as early as 1954, and the following year announced that it would make its data available to the authorities and researchers. The announcement encapsulated Saxén’s starting point: the importance of the Cancer Registry lies in the most efficient use of the data it collects. At the turn of the 2000s, strategic decisions on cancer in Finland were made on the basis of the information provided by the Cancer Registry, and the lobbying activities of cancer associations were also largely based on the information provided by the Cancer Registry .

Following a long history of providing expert assistance to numerous researchers, in the 1960s the Cancer Registry began to organise on-site visits as part of its educational programme for health and medical personnel, and its staff were involved in many aspects of training and health education. Presentations were made at courses and training events organised by the Finnish Cancer Society and scientific associations, among others.

The Cancer Registry provided policymakers and health planners with data to assess the need for hospital beds, research and treatment equipment and nursing staff in the near future. For example, in the late 1970s, it worked with the National Board of Occupational Safety and Health and the Finnish Institute of Occupational Health to register people who had been exposed to carcinogenic substances and methods in their work. Pukkala designed the ASA register, which has been maintained by the Institute of Occupational Health since 1979.

For the planning and expert groups of the National Board of Health’s cancer control work, the Cancer Registry produced a forecast of the prevalence of various cancers in the 1980s. The activities included coding, organisational activities and mailing, which required space for both the archives and the person responsible for the tasks.

Dozens of national and foreign researchers, authorities and students were given the opportunity to various statistical data compiled by the Cancer Registry on cancer incidence in Finland. Most of the information was provided in statistical format, but some researchers were given more detailed information that they needed. Soon, the support provided to researchers expanded from simply providing data to guiding research and helping with analysis. Personalised guidance was provided in the design and conduct of cancer research and in the writing of the research report.

The researchers at the registry published their own articles in newspapers and magazines, as well as in the CSF’s own magazine Cancer. They also serve in various expert positions, as supervisors of academic dissertations and as pre-reviewers appointed by faculties, as well as in expert positions in national and foreign scientific journals.

According to Erkki Saxén, one of the important tasks of the Cancer Registry was to assist and guide researchers in epidemiological and statistical cancer research. This meant participating in the training of researchers in the field, and the Registry’s researchers fulfilled this role by teaching at various universities. Matti Hakama was Professor of Epidemiology at the University of Tampere 1975-2003, and from the Cancer Registry Lyly Teppo, Risto Sankila, Nea Malila and Janne Pitkäniemi took turns holding part-time, fixed-term professorships of cancer epidemiology at the university, while Eero Pukkala was Professor of Epidemiology at the university. Hakulinen had the most spectacular university career, after holding assistant professorships at the Universities of Tampere and Helsinki, he was Professor of Epidemiology and Biostatistics at the Karolinska Institutet in Stockholm 1990-97 and Professor of Epidemiology at the University of Helsinki 1999-2003.

Hakama was instrumental in starting the training of Indian cancer epidemiologists at the Department of Health Science at the University of Tampere. He had been inspired by his work as a WHO expert setting up a cancer registry network in India. The first international postgraduate training programme in epidemiology (International Postgraduate Programme in Epidemiology (IPPE) was organised at the Department of Health Science of the University of Tampere in 1990. The programme was initially conducted every three and later every two years, with the aim of training experts with the skills to produce and use research data on key public health problems in India.

The training programme was initially launched under a bilateral cooperation agreement between the Finnish and Indian ministries of education, but from the beginning, the CSF was a key supporter of the programme, not only funding the training but also contributing to its implementation. The programme was later extended to training students of other developing and low-income countries in general. The 15th course of the programme took place at the University of Tampere in 2021-22.

In 1991, the Cancer Registry, together with the other Nordic cancer registries, held a special summer school on cancer epidemiology, financed by the Nordic Cancer Union (NCU), founded in 1949. After a two-week intensive course, the students worked for six weeks in their respective countries’ cancer registries. The experience was so positive that courses were held every two years. Many of those who completed the training have gone on to work in the field and soon became a significant part of the cancer epidemiology research community in the Nordic countries.

When the graduate school system was created in Finland in the mid-1990s, the Cancer Registry became part of the so-called graduate school of public health, which was built on the public health departments of the Universities of Helsinki and Tampere. Timo Hakulinen was the director of this graduate school from its inception for ten years, 1995-2004, a few years after his return to the Cancer Registry. This enabled the sector to build a strong future while at the same time recruiting well-trained staff and successors to its own activities. Many of those trained also found careers in partner institutions close to the Registry and other organisations with an impact on the sector.

Developing financing

The Cancer Registry was initially funded by the CSF. This was not an easy task for the latter, as the registry was running at an annual cost of FIM 2.5 million by the early 1950s, to which had to be added the indirect costs of the office space it required. This meant that the CSF had to think carefully about how to finance the Cancer Registry. In particular, the possibility of obtaining state aid was examined, especially as the Cancer Prevention Committee had proposed in its 1954 report that the state should subsidise the Cancer Registry to the tune of FIM 2,7 million per annum.

However, the CSF had to finance the registry alone until 1957, when the Ministry of Education provided a grant of one million FIM to support the scientific activities of the registry. In 1961, the Cancer Registry received for the first time funds from a grant awarded by RAY to the Finnish Cancer Society, specifically for the maintenance and utilisation of the Cancer Registry’s database, which was created as a basis for public health work.

When, despite much negotiation, the state budget failed to include an article to fund the Cancer Registry, the RAY became the main supporter of its activities for decades. Its funding gradually covered about half, and in some years even two-thirds, of the registry’s running costs.

The Cancer Registry began receiving funding in the early 1960s for its research with the NIH and WHO, and later other foreign funders such as the IARC and the NCI joined the list. Domestic funding came from the Cancer Foundation, among others, and when a 1975 proposal by the National Board of Health to fund the Cancer Registry with government money was rejected, it began to enter into fee-paying research contracts with the registry for cancer-related surveys and studies.

Although the Cancer Registry, like the other Nordic cancer registries, became one of the best in the world already in the 1970s, financially it had to operate with far fewer resources than the other registries. While in 1974 Denmark spent around FIM 2-2.5 million, Norway more than FIM 2.5 million and Sweden FIM 15-20 million per year on cancer research, in Finland the figure was only around FIM 600 000. This was due not only to the low level of state funding, but also to the fact that the practical work of cancer prevention took up a large part of the resources of the CSF. In addition, the annual accumulation of donations and bequests in Finland was only a quarter of what it was in Denmark, Norway and Sweden.

However, the Cancer Registry’s poor financial situation compared to its Western partners did not mean that it was underperforming in other respects. On the contrary, the quality of the information it produced was at least on a par with the others, and the number of studies it published was for a long time greater than in the other Nordic countries. In order to improve its situation, the Cancer Registry tried to finance its research activities through research contracts, but these only became more common in the 1980s. At that time, it concluded research contracts not only with the National Board of Health but also with the Finnish Institute of Occupational Health, the Occupational Safety and Health Fund, the Public Health Institute, the Radiation Safety Centre, the IARC and the NIH, among others. The costs of the Mass Screening Registry were covered by the inspection fees collected from municipalities.

RAY support plus new sources of funding could not compensate for the lack of regular budget funding from the state, which meant that the first decades of the Cancer Registry were a period of financial stringency and uncertainty. The situation was exacerbated by the fact that decisions on the distribution of the funds from the RAY were always taken in late spring, which meant that for a long time the registry’s finances were based more on conjecture than fact. This meant that the Cancer Registry had to be financed by the CSF for the first 4-6 months of the year, leaving it in a very vulnerable position. If the RAY support had been much lower than expected, the registry’s work would have been jeopardised, at least temporarily.

As the economic downturn prompted by the 1970s oil crisis also tightened the CSF’s finances, Erkki Saxén, Director of the Cancer Registry and Chairman of the Cancer Research Foundation, wrote to the members of the CSF boards in November 1975, that the CSF should stop supporting their eight outpatient clinics, since society, general outpatient clinics and private clinics had arranged outpatient clinic activities satisfactorily, and in early diagnosis the CSF’s outpatient clinics were of little significance. The CSF Cancer therefore concentrate activities in areas that really needed support. There was no room for compromising on improving awareness, information and education. Scientific research could not be over-supported and the maintenance of a Cancer Registry was essential.

Despite Saxén’s influential position, the CSF board considered reducing the Cancer Registry’s activities. A working group set up by the board presented a memorandum in 1978, which considered the future direction of the CSF. It concluded that the Cancer Registry was such a fundamental element of cancer prevention that its continued operation should be safeguarded, but not under any conditions. If the level of support from the RAY in 1978 remained modest, the future of the registry would have to be reconsidered, as the CSF was not able to finance the registry on an ongoing basis, swallowing up several hundred thousand marks a year. Its maintenance had to be put on a permanent footing, whether funded by the RAY or wholly or partly by the state.

This time, too, threats to the state were unsuccessful. As the economic situation improved, the benefits of the Cancer Registry were found to be so significant that its operation and development continued as before.

Basis for international relations

Erkki Saxén’s aim was to make the Cancer Registry immediately known worldwide. From 1954 onwards, he was a frequent speaker at international conferences, presenting the Cancer Registry’s activities and publications, while establishing contacts with key cancer researchers and international organisations and research centres. It is fair to say that he was a skilled networker even before the whole word had been invented.

Saxén’s work was based on the view that an effective fight against cancer could not be achieved by national efforts alone. In order to collect sufficiently large numbers of cases and improve statistical validity, cancer research required international cooperation. In addition, the Cancer Registry was involved in international activities not only to influence but also to contribute to the global effort to fight cancer.

The Cancer Registry’s regular publication and participation in major NIH and WHO-funded studies in the early 1960s raised its profile so much that the number of foreign researchers becoming familiar with its work increased year by year during the decade. The advent of mass screening further increased the number of foreign visitors. Moreover, not only did all the visitors become familiar with the registry, but some also worked there for varying lengths of time. Notable visitors included Harald Hansluwka and Albert Tuyns, the WHO’s Director of Statistics, John Higginson, Director of the IARC, who was trying to recruit Registry scientists for the IARC in Lyon, and Henry Eisenberg of the Connecticut Cancer Registry. Several internationally prominent guests of the CSF, including Dr Milred Scheel, spouse of the President of the Federal Republic of Germany, and Ch’en Wen-chie, Deputy Director-General of the WHO, also wanted to see the Cancer Registry.

His position as director of one of the world’s oldest and most comprehensive cancer registries gave Saxén an influence he did not hesitate to use. In 1959, he was appointed a specialist in the WHO’s cancer section, and in 1965 he was appointed editor-in-chief of the International Journal of Cancer, a revised journal of the Union for International cancer Control (UICC). The journal was initially housed free of charge in the premises of the Cancer Society, from where it was transferred to the Department of Pathology III of the University of Helsinki at the end of 1966. The journal was supported by the CSF for many years and Saxén was editor-in-chief until 1985.

Saxén’s prestige in international cancer circles was reflected in the many honours and honours he received. Among others, he was a member of the IARC Scientific Council 1977-81 and Secretary General of the International Association of Cancer Registries (IACR) 1979-84. In 1985 he was made an honorary member of the IACR and the following year he was also awarded the UICC Recognition Award for his services to cancer research and international cancer control.

Saxén encouraged and promoted the internationalisation of the rest of the Cancer Registry staff, not so much verbally or explicitly, as he was a man of few words, but rather by example and as a natural part of his work. When the Cancer Registry’s activities and research had to be presented at international meetings, he brought colleagues along. Aino Korpela attended international meetings in the 1950s, and Matti Hakama and Kimmo Koskenvuo attended the final meeting of the NIH Life Survival Study in Sandefjord in September 1963. Following a fellowship year at the University of Minnesota in Minneapolis and the establishment of the Mass Screening Registry, Hakama became a sought-after presenter and expert at international cancer meetings, as Finland was a world pioneer in screening.

In the 1970s, Hakama was a member of WHO and IARC expert groups tasked with assessing the development of cancer mortality projections and the role of mass screening. For more than 20 years, he was a WHO advisor on planning activities for cervical cancer screening, cancer registration and epidemiological cancer research in India, and an advisor to the European Regional Office on cancer control planning. He was also elected to the UICC committee that developed the organisation’s cancer prevention programme 1987-90 and chaired its programme team that designed the evaluation of the effectiveness of cancer control interventions in 1991-92.

After joining the Cancer Registry, Lyly Teppo, Timo Hakulinen and Eero Pukkala quickly became involved in international activities. For example, as early as 1975, Teppo and Hakulinen attended a course organised by the IARC on cancer registries and occupational cancer research. In 1978, Teppo was a member of a WHO expert group tasked with identifying the problems of cancer control in Kuwait, Iraq and Sudan and drawing up a plan to improve the situation.

From 1977-78, Hakulinen worked as a postdoctoral researcher at the University of California, Berkeley, with grants from the IARC and the Nordic Cancer Council, studying the theory of competing causes of death and its application to the estimation of survival rates in cancer patients. Like Hakama’s study trip to Minneapolis, Hakulinen’s destination was carefully chosen. The University of California had a long tradition of statistical cancer research, with several key researchers in the field. Hakulinen soon became one of the world’s leading estimators of cancer survival and, in 1985, was a WHO expert on mortality estimates for all UN regions for which there were no reliable cancer statistics, or any statistics at all.

Since the Cancer Registry’s rise in the 1970s to join the Norwegian Cancer Registry as the world’s leading cancer registry, its staff have served in a number of leadership and expert positions in the WHO, IARC and UICC, and participated in their programme and planning meetings. Its researchers have served as teachers and workshop leaders at training events and meetings around the world, giving dozens of presentations each year, mostly at the invitation and expense of the organisers.

Since the 1950s, the Cancer Registry had good relations at organisational level with international research institutes and organisations. In particular, there was cooperation with the UICC, IARC, IACR, WHO, the European Association of Cancer Institutes (OECI) and the NCI on various expert tasks, research projects and cancer statistics. The University of Oxford was a partner in research on the link between blood chemicals and cancer, among other things.

From the very beginning, the closest cooperation of the Cancer Registry was with the Nordic cancer registries. For a long time, the Nordic countries were the only ones with a complete cancer registry and a research institute to maintain it. The regular annual meetings and symposia held in the different countries were attended not only by the managers but also by many other representatives of the registry, such as actuary Marja Lehtonen, researcher Esa Läärä and Leena Tenkanen, and many others after them. In the mid-1980s, an extensive study on cancer incidence trends in the Nordic countries was published, and in 1988 the Nordic Cancer Map was completed. There were also several joint Nordic studies on cancer risk mapping in the work environment.

The cooperation between the Finnish and other Nordic cancer registries has been of great importance for cancer research worldwide. With cancer registries operating in each country, following commonly agreed practices, and a base population of more than 20 million, the countries offered much better opportunities for cancer research than any single country’s data. As a result, the Nordic countries have held and continue to hold a considerable number of leadership and trust positions in international cancer organisations, in relation to their population, and Finnish researchers have borne their share of responsibility in this respect.

The Cancer Registry’s links with cancer organisations and research institutions in the Soviet Union and Eastern European countries were for a long time rather limited. The intensification of relations began in 1972, when the Secretary General Niilo Voipio, at the invitation of the Soviet Ministry of Health, attended a nationwide meeting of the local oncology association in Tallinn and, after the meeting, also visited Leningrad. Voipio’s invitation was apparently motivated by the hosts desire to establish close information exchange relations between the cancer research institutes in Leningrad and Tallinn and the CSF.

The visit led to the desired result, and the Cancer Registry became a Finnish party to the 1980 Framework Agreement on Oncology between the Finnish and Soviet Ministries of Health. The relations, which soon developed into research cooperation and researcher exchanges, differed from those in the West in that they followed the Soviet line of cultural cooperation, characterised by a planned and collective approach. Instead of contacts between individuals, it took place mainly through state organisations and carefully prepared trips and meetings. Under a framework agreement, the Cancer Registry entered into research cooperation with the Petrov Institute in Leningrad and the Estonian Cancer Registry. In addition to joint research projects, the programme included an alternating symposium of a few days in each country.

Cooperation between the Finnish Cancer Registry and the Polish Oncological Institute (which included the cancer registries in Warsaw and Krakow) was also based on an agreement signed in 1978 by the countries’ ministries of social affairs and health. Several studies were carried out with the Polish Oncological Institute, including the preparation of Polish cancer mortality maps in Finland using the same methodology as the Finnish incidence maps.

For Estonian and Polish researchers in particular, the Cancer Registry offered not only an exchange of scientific information, but also a view to the West, as the cooperation agreements included periods of visits to the Cancer Registry by researchers. The cooperation with Polish and Estonian researchers was of high scientific quality and laid a good basis for a direct scientific partnership that was soon to open up.

The many prominent positions held by Finnish researchers in international cancer organisations are proof that cancer education, which is strongly supported by cancer organisations and the Cancer Registry, produces researchers whose research serves not only Finnish cancer work but that of the whole world. The Brazilian-born Elisabete Weiderpass, also a Finnish citizen, who was selected as the 2018 Finnish candidate for Director General of the IARC, began her research career at the Finnish Cancer Registry in 2004.

Growth of registry data

The number of cancer notifications sent to the Cancer Registry had started to increase after 1961, when the National Board of Health had made it compulsory to send them in a general letter, and this was further confirmed in a 1963 guidance letter. While 19 900 notifications were sent in 1960, 10 years later the figure had risen to 42 600. It was not until 1979 that compensation for those who sent the notices was abolished.
The table below shows the evolution of cancer notifications received by the Cancer Registry from 1953 to 1989, after which the number of physical notification cards decreased, when cancer notifications began to be sent in increasing numbers in electronic format. The Cancer Registry was not just the recipient of the notifications, but sought to supplement the statistics with further inquiries.  For the 1968 statistics, it made about 4 000 enquiries and went through all the Finnish death certificates issued in the year in question. On the basis of the death certificates alone 3% of all cancer cases were included in the statistics.

Cancer notifications sent to the Cancer Registry 1953-89

Year Cancer notifications Per year
1953-59 113 700 16 200
1960-69 327 100 32 700
1970-79 575 200 57 500
1980-89 671 600 67 200
Total 1 687 600

In the early 1970s, the increase in the number of notifications led Timo Hakulinen, the head of statistics, to consider solutions that would speed up the registration and compilation of data. In 1973, all the data in the registry was transferred to magnetic tape and a computer programs were developed which allowed incidence, prevalence and prevalence and survival tables could be compiled by computer. Computer programmes soon began to be to be used in research, for the first time in survival studies. For all the registration of new cases was still based on manual coding, but now it was possible to prepare for the computer age by moving to the identification of new patients by the use of a personal identity number.

In 1975, Hakulinen transferred the main responsibility for the development of the Cancer Registry to Eero Pukkala, an IT designer he had hired, but still took care of the statistical data processing. Pukkala was appointed the following year as chief designer of the registry, and he also took over Hakulinen’s duties during his Berkeley trip in 1977-78. The computerisation of the comparison between Statistics Finland’s register of deaths and the Cancer Registry, a long-standing objective, was completed in 1979. At that time, the computer runs required for the annual report of the Cancer Registry were carried out for the first time at the University of Helsinki’s Computing Centre by its own resources without external computer assistance. Computer runs of the Mass Screening Registry
was still carried out at the State Computer Centre.

The number of cancer notifications sent to the Cancer Registry peaked in 1982-83, with more than 87 000 in each year. In the spring of 1984, the CSF board therefore decided that the Cancer Registry needed its own computer, which would allow the daily routine operations of the Registry to be completely real-time. At Eero Pukkala’s suggestion, a VAX 11/750 computer was purchased for the registry, and the design and programming of the computer system required proved so demanding that it continued throughout 1987.

The new system made it much easier to manage daily routines and epidemiological research, and also made it possible to assess treatment results more quickly. There was also a practical benefit: no further need to keep notification cards, which freed up office space for other purposes. On the other hand, the acquisition of a computer led to an increase in the number of computer tasks, which meant that the registry had to hire staff such as data system designer Bengt Söderman.

In addition to buying a new computer, another major project related to the registration was the microfilming of old data. The aim was not only to save space but to ensure the preservation of the original notification cards in the event of an accident. The microfilm equipment was purchased in 1984, and the tests filming was started at the end of the following year. Initially, microfilm was to be used for to transfer the data of all patients in the files of the Cancer Registry who had died before 198. Later, microfilm was used to transfer more recent cancer reports as they became available for storage from the cards to VAX.

The aims of the new computer system began to be fulfilled at the start of Teppo’s directorship, when many laboratories started sending cancer notifications on magnetic tape or disk. In a memo written in early 1989, Teppo noted that the new computer system had improved the registration of cancer cases, so that the entire notification data was almost immediately stored on computer, summary coding was done by terminal and statistics were produced directly from computer. If a sufficiently large proportion of the notifications were available in electronic format and sufficient coding manpower was available, it would be possible to achieve a situation where revised annual statistics would be available less than two years after the end of the year of collection.

The development of data processing continued at the turn of the 1990s, when it was realised that the capacity of the central computer of the Cancer Registry was no longer adequate. In 1991, just before the economic recession deepened, the Cancer Registry was able to take delivery of a new central computer (VAX 4000), 60% of the cost of which was borne by the RAY. The publication of annual statistics continued as before, and in late 1992 it was possible to publish cancer statistics covering, exceptionally, two years, 1989 and 1990. In 1994, Teppo’s wish was fulfilled when the 1992 cancer statistics were completed during the year.

Despite the increase in computer capacity, registration did not progress as hoped. This was because, although death records and the majority of cancer reports from pathology laboratories were received electronically, the diversity of hospital software made it difficult to transfer clinical data automatically. Indeed, even in the 2010s the majority of cancer data was still received on notification cards. In February 2016, a web-based cancer reporting system was launched, but most clinical cancer data was still done on paper. Paper reporting was phased out only at the end of 2020.

Deficiencies in reporting became evident in spring 2019, when it was possible to compare the final cancer statistics completed at that time with the preliminary statistics published for the first time the previous autumn. The final statistics were more complete, especially for pancreatic, lung, liver and biliary tract cancers, as these cancers were often diagnosed so late that the reports lacked a clinical cancer report, i.e. a diagnostic summary by a doctor. The Cancer Registry therefore intensified its cooperation with all university hospitals. The aim was to have a clinical report in the registry as soon as the cancer was confirmed and a treatment decision made.

After almost 70 years of collecting cancer data, the coverage of the Cancer Registry is excellent, probably better than in any other country in the world. Finland’s small population, standardised practice in the diagnosis and treatment of cancer, and the personal identification system had combined to create a database that provided Finland with exceptionally good opportunities for epidemiological research. This excellent result was the result of a confidential and mutually beneficial relationship between the Cancer Registry and the health care field: the Cancer Registry received information from the field and the providers of basic data, mainly doctors, hospitals and laboratories, in return received important information from the Registry on cancer prevalence and patient survival prognosis, among other things.