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Managed leadership change

The Cancer Registry entered a new phase in the late 1980s, when two people who had contributed to its development since the early 1950s, Niilo Voipio and Erkki Saxén, retired. As secretary seneral of the CSF and a member of the Cancer Registry Committee, Voipio had supported the practical work of the registry in many ways and had contributed to its financial continuity. As the founder of the Cancer Registry, Saxén had defined its policies and developed it into a world-class registry and research institute.

When Niilo Voipio retired at the end of 1986 after 37 years of service, 18 people applied for the post of secretary general of the CSF. After discussions by the boards of the CSF associations, the candidates were selected for the next round were: Kalevi Viljanen, who had led the fundraising activities of the Cancer Foundation and the Finnish Association of People with Physical Disabilities, and Liisa Elovainio, who had been a health education doctor for the Cancer Association since 1974, and Kalle Justander, Executive Director of the Central Association for Child Protection, and Raimo Vasama, Medical Counsellor of the Finnish Medical Council. In the decisive vote, Elovainio received 12 votes and Justander 2 votes. Liisa Elovainio took over as secretary general on 1 January 1987.

Like Voipio, Elovainio understood the importance of safeguarding the Cancer Registry. Although the maintenance of the registry was often transferred within the CSF, its position within it ensured that it avoided the administrative rush that began with the abolition of the National Board of Health in 1991 and ended with the establishment of the National Institute for Health and Welfare (THL) in 2009. As the Cancer Registry was located outside the institutions undergoing change, it was safe from redevelopment. For many other governmental agencies supporting various diseases and their research sectoral research institutes for various diseases and health services.

Liisa Elovainio: The significance of the Cancer Registry

When Erkki Saxén was about to retire on 23 August 1988 after 36 years, many people, especially outside the CSF, wondered how the Cancer Registry would cope with the departure of its second strongman. Within the industry, it was known that the concern was groundless. Saxén was different from many other pioneers in his field in that he had complemented his work for the Cancer Registry by ensuring that a good successor to his work would be found. And it was not just one potential successor, but three. The task of preparing the selection of a successor was entrusted to a joint working committee of cancer organisations, chaired by Markku Seppälä, Professor of Obstetrics and Gynaecology, which asked Saxén’s long-time colleagues Matti Hakama, Timo Hakulinen and Lyly Tepo for their views on how the question of the Cancer Registry’s director should be resolved and how the statutes adopted in 1967 should be revised.

Everyone understood that this was a kind of leadership interview, where the potential candidates were, like Saxen, Teppo, who had trained as a doctor, and two statisticians, Hakama and Hakulinen, who specialised in cancer epidemiology.

Hakama and Hakulinen stressed the same points in their statements. Both felt that the 1967 Cancer Registry statutes were outdated. They gave the Cancer Registry Committee a central role, even though administrative developments had linked the Cancer Registry more closely to the National Board of Health in the early years. In addition to defining the administrative role, they felt that the statutes should take into account the changes that the Act on Personal Data Registers and the forthcoming Act on National Personal Registers in Health Care will bring to the operations of the Registry.

Although the production of routine statistics and the maintenance of the registry were still an essential part of its activities. In Hakama and Hakulinen’s view, the nature of the Cancer Registry had increasingly changed over the years to that of a research institute. The number of staff had increased and the level of its research had risen to the highest international standard. The management, planning and development of an institute with more than 20 staff required a full-time director who could devote themselves not only to statistics but also to statistical and epidemiological cancer research.

As a full-time director of the Cancer Registry, they would be responsible in particular for the development, coordination and international cooperation of the Registry’s research activities. This required a science qualification, at least a doctorate, plus administrative experience. As the Cancer Registry was a statistical and epidemiological institute for cancer research, the director would need to have a broad knowledge of research in this field. This qualification was not based solely on knowledge of cancer biology (medical profession) or statistical and epidemiological research (statistician or epidemiologist), but rather the skills and ability to innovate and lead in terms of content, exhibited in practical research activity.

Both Hakama and Hakulinen felt that the environment in which the Cancer Registry operates had changed so much that this should be reflected in the statute. Since the Cancer Registry’s links with cancer data reporters and the responsibility for sensitive data were as important as cancer biology expertise in handling the data, the statutes should state that the Cancer Registry has a post of Chief Medical Officer, qualified as a specialist in pathology.

The tasks of the Director of Statistics should remain unchanged. Automatic data processing was such an important part of the Registry’s activities that the statutes should include a reference to the computer systems manager and other IT staff.

Lyly Teppo, in his own statement, did not rush to reform the statute. In his opinion, it was for the most part appropriate, as it contained clear instructions on, for example, the replacement of the registrar. From a technical and formal point of view, the election of a new director of the registry did not in itself require a change in the statutes. They contained however, an important statement of principle on the qualifications of the director of the registry: the director must be a medical doctor by training.

The Cancer Registry was a research institute, so its director had to be a docent and familiar with epidemiological cancer research, according to Tepo. No formal qualification was available in Finland in this field, so this expertise had to be established on the basis of the candidate’s previous activities and, in particular, the orientation and scope of his scientific publications. In his view, these criteria did not require the director to have a medical degree. As the majority of the Cancer Registry’s contacts are with researchers and officials who themselves have a basic medical training, and as the whole basis of the Registry’s activities, cancer reporting and related contacts, are with hospitals and the various branches of the health care system in general, a medical education is still a great advantage for a director of the Cancer Registry. If the candidates are equal in other respects, the choice should go to the candidate with medical training.

Since the current statutes did not mention anything about the full-time or part-time nature of the Cancer Registry directorship, it therefore, in Teppo’s view, in principle allowed for both solutions. Over the decades, the Cancer Registry’s activities had expanded, its staff had grown and its overall work had diversified to the extent that the post of director could well be full-time. Yet, it should not be of a purely administrative nature and the director should be actively involved in the research work of the Cancer Registry.

In Teppo’s view, it would be worth considering changing the composition of the Cancer Registry Committee, but he considered it important that it should continue to include representation from the CSF, Finnish Institute for Health and Welfare (THL) and Statistics Finland.

The statutes of the Cancer Registry should include a reference to the Cancer Registry management committee, consisting of representatives of the THL and the CSF, and to the division of tasks between it and the Cancer Registry committee. It should also state that the CSF (Research Foundation) were responsible for the external framework of the Cancer Registry (premises and staff) and the THL for providing the cancer and population data required.

If the statutes are revised, a reference to IT staff should be added. The statutes should also clarify the role of the Mass Screening Registry and its director in relation to the Cancer Registry and its director and delineate its functions and funding.

Teppo reported that he had read the proposal for a new regulation for the Cancer Registry attached to the statements by Timo Hakulinen and Matti Hakama. He indicated that he agreed in principle with the proposals mentioned therein, but that, in contrast, he proposed that the qualifications for the chief medical officer of the Cancer Registry should be limited to a specialist degree and knowledge of cancer.

The board of the CSF decided on the election of the director of the Cancer Registry and the renewal of its statutes at its meeting on 21 March 1988. It considered that the Cancer Registry had performed so well under the medical director and the present statutes that there was no need for major changes. It unanimously agreed to propose to the CSF board that Lyly Teppo be elected as the full-time director of the registry.

It considered Teppo’s qualifications as a specialist in pathological anatomy to be a good criterion and that he could in due course prepare the changes to the statutes of the registry required by the new legislation.

The Cancer Research Foundation’s board supported the nomination of Teppo as the director of the registry, and the Cancer Registry committee proposed that he serve as interim director until the legislation on health registries was finalised. Erkki Saxén, in a letter to the board, suggested that it would be appropriate for the Cancer Registry to change director when he reached retirement age on 23 August 1988. He expressed his satisfaction that the criteria for the appointment of directors had emphasised the importance of medical training and that the post of director be made full-time. He also proposed that the chair of the Cancer Research Foundation be elected as chair of the steering committee and the Registry’s committee.

Saxén’s proposal was carried. In mid-May, the CSF board appointed Lyly Teppo as the permanent director of the Finnish Cancer Registry as of 24 August 1988. It was hoped that Teppo would prepare a memorandum on the Cancer Registry and its activities for the board of the Cancer Research Foundation. Pentti A. Järvinen, board chair of the Cancer Research Foundation, was elected as chair of the Cancer Registry management group and the registry’s committee, and he was succeeded by Professor Jussi Huttunen, who died in September that year.

Saxén could apparently have used his authority to settle the leadership issue in advance by nominating Lyly Teppo as his successor. However, he wanted the solution to be reached in an academy-like manner, with each potential candidate being allowed to present their views to the board, which would then decide. This was a good solution in that it cleared the air and brought forward views that could be used in the future to develop the Cancer Registry.

Lyly Teppo’s memo

The change of director of the Cancer Registry was finally confirmed on 16 January 1989, when the joint board of the CSF approved Lyly Teppo’s contract and job description. Under the terms of the contract, the director was to lead, supervise and develop the activities of the Cancer Registry and the Mass Screening Registry, which had been set up under the authority of the board of the Cancer Research Foundation. He was responsible for the medical adequacy of the Cancer Registry’s activities and for ensuring compliance with data protection and other legislation and regulatory guidelines. In addition, the Director was responsible for:

  • liaising with cancer registrars and monitor the coverage of registration and the accuracy of incoming cancer registration data;
  • coordinating the research work based on Cancer Registry data;
  • manage the registry’s international contacts.

The director’s duties comprised a lengthy list, especially considering that Teppo had to manage 26 staff and also act as the chief physician of the registry, which meant that he was responsible for coding cancer cases, among other things. In a memorandum to the board of the Cancer Research Foundation describing the work of the Cancer Registry, he suggested that consideration should be given to the creation of the post of chief medical officer. This proposal did not materialise during his term of office, leaving him in charge of the medical work. Although Hakulinen continued to carry out personnel management duties, Teppo was obliged to comply with his request, made in March 1988, that the director of the Cancer Registry should be actively involved in its research work.

Upon signing the contract, Teppo provided the requested memorandum on the operation of the Cancer Registry in 1989. It was, according to him, divided along two lines. The basic activity was the registration of cancer cases and the production of cancer statistics, but alongside this was research work on cancer. Drawing a line between the two activities was not a simple task, nor was it absolutely necessary. Especially as both were linked by an increasing dependence on computers. Several laboratories and a few hospitals had switched to computers and were providing their cancer data to the Cancer Registry in machine language, so the development of an efficient data processing system required an increase in statistical staff. On the other hand, computers had greatly speeded up the practical work of the registry, and many scientific research projects had only become possible thanks to computers. The full development of an efficient computer system was a key element in the future work of the Cancer Registry.

In addition to basic statistics, the registry produced case number and incidence data for various purposes and produced cancer maps and trends, which had both administrative and research uses. Forecasting the cancer situation for the coming decades remained one of the registry’s main tasks. Research was divided into descriptive cancer research, meaning the calculation of incidence and survival rates by sex, age or regional distribution, and analytical cancer research, which involves research on cancer risk factors. The registry had done a lot of research on the risk of cancer in the work and living environment, which was to continue to be an important part of its research activities. This was demonstrated by the fact that the registry, with the support of the Finnish Work and Environment Fund, had established in 1988 a special investigator’s post specifically for the study of cancer risks related to the work and living environment, which was held by Dr Sakari Karjalainen.

According to Teppo, the Mass Screening Registry focused on evaluating mass screening for pre-cancerous cervical cancer and early breast cancer. The research had proven useful: the prevalence of invasive cervical cancer had been greatly reduced. The good results of the evaluation had given health authorities in many other countries a basis for initiating similar screening.

For the nationwide mammography surveys started in 1987, the difficulties in the operation of the Mass Screening Registry were partly the same as those that made the screening itself difficult. For example, agreement had only recently been reached on the type of card on which to record mammography findings. There was also uncertainty about what data would be collected on the women being examined, while data protection legislation had raised questions about who should be allowed to collect the data. It would therefore be appropriate that the recording of the data collected and the routine monitoring of activities should remain mainly at local level, that is in the screening units. The Mass Screening Registry could then concentrate on collecting this data and assessing the effectiveness of activities at national level.

The Cancer Registry had good international working relationships that were being continuously developed. The closest cooperation was of course with the other Nordic cancer registries, but links with the Soviet Union and Polish cancer research institutes had also intensified during the 1980s, as evidenced by the 1989 monograph Cancer Incidence in Finland and the USSR, published in the Eastern Neighbourhood. The expertise of the Cancer Registry’s researchers was utilised in various expert assignments both at home and abroad, including projects related to WHO, IARC and UICC activities.

To show the extent of the research work carried out in the Cancer Registry, Teppo had included a list of publications produced by the registry in 1987-88 at the end of the memo. The list contained 70 publications, of which the top minds of the registry (Teppo, Hakama, Hakulinen and Pukkala) had been involved in 49, or 70%. Hakulinen had the highest number of entries in his list of publications (19).

The future of the Cancer Registry looked promising to Tepo, as it had achieved a respected position in the field of epidemiological and statistical research on cancer, and its data was being used for administrative, educational and awareness-raising purposes. Ensuring adequate funding, attention to the scientific competence and professionalism of the staff and good contacts with cancer referrers were important elements in maintaining this position. It was also hoped that data protection issues would not unduly hamper the research activities of the registry.

Teppo felt that in terms of the continuity of the registry’s activities, it would be important that the bulk of its funding be permanent and independent of the current research policy priorities of research funding bodies. Decisions on new research projects should continue to be taken by the Cancer Registry. Only large-scale projects requiring separate funding and major research and other contracts should be referred to the Cancer Registry committee and, if necessary, to the governing bodies of the CSF.

According to Tepo, the incoming act (556/1989) and decree (774/1989) on national personal registers in the health sector were to provide a ‘legal’ basis for the registry’s activities. The act stated the obligation of authorities, institutions and health care personnel to send cancer reports to the registers, and the decree specified in more detail the data to be recorded in the Cancer Registry and the Mass Screening Registry. The Decree also contained a provision allowing the National Board of Health to agree with the CSF on the technical maintenance of the Cancer Registry. Mr Teppo anticipated that the National Board of Health would amend the old circular on the transmission of cancer notifications after the act became law. This is what happened: at the end of 1990, the CSF central office issued two guidance letters giving instructions for reporting cancer cases to the Cancer Registry and for reporting mass screening data to the Mass Screening Registry.

Teppo concluded by saying that Finnish society increasingly needed the kind of information that the Cancer Registry could provide. Satisfying this diverse need for information and cancer epidemiological research would continue to require a Cancer Registry that attracts competent staff from a wide range of backgrounds.

Changing world and context

Lyly Tepo’s intention was essentially to continue the policy developed under Saxén, which had led the Cancer Registry to become one of the world’s leading cancer registries. All went well for a few years, but then the world and Finland’s books got mixed up. During the first half of the 1990s, much of the foundation on which the Cancer Registry had built its operations was eroded by major administrative, political and economic changes.

First, the National Board of Health was abolished, something that had been prepared as early as 1987 as part of a major central administrative overhaul. Due to the administrative revamp, the steering group of the CSF and the National Board of Health did not meet at all in 1989, nor did the Cancer Registry committee, which was no longer constituted. The central office was finally abolished in March 1991, when it was merged with the Social Welfare Board to form the Social Welfare and Health Board. At the beginning of the same year, the responsibility for maintaining the Cancer Registry had been transferred back to the CSF in order to simplify the administration of cancer organisations and in light of the Decree on Health Care Registries.

In 1991, the Soviet Union ceased to exist. Even before its final collapse, it had already had to accept the unification of the Germanys. Russia emerged as the new power in the East, allowing the former Soviet republics to become independent and the former Soviet satellite states of Poland, Czechoslovakia, Hungary, Romania and Bulgaria to pursue independent policies. The demise of the Soviet Union collapsed Finland’s trade with the East, but also opened the door to a westward orientation. After the 1992 EEA agreement and the purchase of Hornet fighter jets, the next decisive steps towards the East were taken in 1994, when Finland joined the EU following a referendum, and in 2022, when Finland, together with Sweden, applied for NATO membership.

All these major changes affected the Cancer Registry. After the abolition of the National Board of Health, control of the registry was transferred first to the Social and Health Administration in 1991, and then, after the former was fragmented, to the National Research and Development Centre for Welfare and Health (Stakes), which started operating in December 1992, and with which the CSF concluded contracts for the maintenance of the Cancer Registry and the related Mass Screening Registry. The contract with Stakes lasted for more than 16 years until the THL, established in early 2009, took over the maintenance of the Cancer Registry the following year. A management team of five members and their personal deputies was set up by the THL to steer and supervise its operation and technical maintenance. Two of the members were appointed on the basis of a proposal from the CSF.

The changes in administrative status severed long-standing working relationships between individuals, but otherwise did not have a major impact on the operation of the Cancer Registry. The impact of the collapse of the Soviet Union was of a different order altogether. Official relations between the Soviet Union and, in the context of the Soviet Union, Estonia and Poland were replaced by direct contacts with research institutions and scientists in Russia, Estonia, Poland and other countries that had taken over. In particular, contacts with the Estonian Cancer Registry became lively, but cooperation also continued with the Polish Cancer Registry and the Petrov Institute in St Petersburg.

The collapse of the overheated economy and the end of the lucrative Soviet trade at the same time created the worst economic crisis of the early 1990s in independent Finland, which caused severe financial problems for the cancer organisations. With diminishing returns on assets, deteriorating institutional performance, failure to meet fundraising campaign targets, and lower than expected income from bequests and donations, they were forced to adapt their operations and staff to financial constraints. The number of staff employed by the CSF and its member associations fell from 208 in the boom year of 1989 to 183 by the end of 1992. For the Cancer Registry, this meant that no new posts were created and no vacancies were filled. The recession only began to ease in 1996, when research grants from the CSF began to increase after four years of decline.

The difficult economic situation also hit the Cancer Registry. Its staff numbers fell sharply in the early 1990s. In 1988, the Registry employed 27 people, but by 1994 the number had fallen to 20, of whom only three worked full-time and five part-time on research. However, this was only partly due to the recession, as the reduction in staff numbers was largely planned, as the amount of manual work had collapsed thanks to the efficient computer system.

Work that was perceived as valuable and efficiently streamlined saved the Cancer Registry from the worst cuts. Although in the most difficult times there were proposals to cut its activities or at least put them out to tender, such plans fell through. The Mass Screening Registry fared less well. The already fierce competition in the laboratory sector intensified in 1992, when mass screening first became a competitive service, and municipalities contracted to cancer organisations began to reduce their screening services. When the 1993 state contribution reform increased local authority decision-making power over resources for health care, and thus for cancer control, municipalities began to procure screening services from where they could be obtained most cheaply. As a result, the mass screening activities of cancer organisations were heavily loss-making by the end of the 1990s.

With the transfer of screening tests from CSF laboratories to municipalities and private laboratory treatment, the data were no longer as well received by the Mass Screening Registry. This posed challenges for the registry, which had to be able to manage the planning and reform of screening, the assessment of mortality changes and the performance of screening and quality assurance research, despite the difficulty of data flow.

Finland’s membership of the EU also had a significant impact on the Cancer Registry. The organisation funded a lot of cancer research, as cancer was the second leading cause of death in the EU after cardiovascular diseases. The Cancer Registry started to receive funding for their research from the EU and to participate in research and cancer prevention projects launched by the organisation. Its main concern about EU membership was data protection, where it was feared that laws and regulations would become so strict that the registration of cancer cases and epidemiological cancer research would be compromised. The Cancer Registry had been concerned about data protection from an early stage, as Eero Pukkala had published a study on the subject in 1981 Data protection of the individual and its implementation in the Finnish Cancer Registry, where the principles established were used, among others, to draw up the first draft of the European Association for Cancer Research (EACR) data protection guidelines.

In the negotiations with the EU on the development of data protection legislation, Timo Hakulinen in particular was responsible, along with the other Nordic cancer registry representatives, for ensuring that the countries’ proven track record in cancer research could continue. When it comes to cancer, individual rights are not always the same as individual interests, but the patient must be entitled to be wrong.

Renewal of research

Lyly Tepo’s leadership began in a period of such administrative, political and economic upheaval that it was necessary to abandon major new operational and research openings. The main focus had to be on basic tasks and the completion of research projects that had been launched. It was important that the registration of cancer data continued uninterrupted, as this was the raison d’être of the Cancer Registry and the basis of much of its importance.

In the 21st century, the Cancer Registry continued many of the studies of previous decades, such as survival studies, the role of living and working environment and serum levels as a predictor of future cancer risk. Research has focused on various vitamins, trace elements, cholesterol and cancer markers. The Cancer Registry’s database was used to investigate the cancer risk of patients suffering from asthma, rheumatism and hypertension, for example, using different study designs.

Eero Pukkala: Living environment and cancer

Studies focusing on the renewed risk of cancer in cancer patients continued. The same predisposition can cause cancer in many organs. Cancer patients may have possessed biological and genetic traits that increased their risk. Cancer treatment (radiotherapy and chemotherapy) may also have increased this risk. In addition to assessing the magnitude of the new cancer risk, the studies sought to establish the background of possible overdiagnosis. The studies by Lyly Tepo and Risto Sankila on the impact of cancer and its treatment on a patient’s fertility and the intellectual and other development of her children led to further research.

As Finland had been caught in the fallout of the Chernobyl nuclear accident, with the exception of Lapland, it was inevitable that the Cancer Registry would be involved in investigating the consequences of the accident. The first studies were launched in the late 1980s, and in 1991 the Cancer Registry began to investigate together with the Radiation and Nuclear Safety Authority the impact of radioactive fallout from the nuclear accident on the risk of leukaemia and lymphoma in children. Towards the end of the decade, the Cancer Registry also investigated the health effects of people in the Baltic area who were involved in clean-up work after the nuclear accident and the radiation doses received by Finns in Kiev. These were found to be so small that they did not result in increased cancer incidence.

The studies showed that uranium or radon levels in Finland were not associated with an increased risk of leukaemia. No abnormal cancer incidence was found in Finnish nuclear power plant workers. As recently as 2013, two collaborative studies on cancer risk after the Chernobyl nuclear accident were published after lengthy research, confirming the old findings.

Although many old lines of research continued in the 1990s, advances in molecular biology, the development of statistical methods and the revolution in information technology meant that it was now easier to find answers to new questions. Infections as a cause of cancer, for example, now became an important research topic. Studies were carried out to investigate the role of various bacteria (such as helicobacter) and viruses (HPV and EB) in the development of cancer, usually in case-control studies. These studies included essential serum banks containing samples from healthy individuals.

Another subject of research that became more common during this decade was cancer heredity, which had already started to gain attention in the 1980s. The aim of genetic epidemiology, which lies at the interface between cell biological genetic research and traditional genealogical research, was to investigate the contribution of heritability to the development of different cancers and, in a second stage, the role of genetic mapping and screening at the population level. This work involved geneticists and clinicians who collected population data alongside the Cancer Registry researchers. Studies, usually starting from the assessment of cancer risk in relatives of known index cancer patients, were carried out to determine the heritability of breast cancer, colorectal cancer, gastric cancer, ovarian cancer and prostate cancer.

Sakari Karjalainen: The researcher ages, but research results don’t

The 1991 epidemiology dissertation by Sakari Karjalainen, a specialist researcher at the Cancer Registry, Equity and cancer patient survival, showed that medicine alone cannot solve the problems of cancer treatment. Karjalainen assessed social equity by studying the impact of place of residence and social status on the effectiveness of cancer treatment and patient survival. The results showed that regional health inequalities were partly due to differences in the level of equipment in central hospitals, but especially to differences in the social status of patients. Breast cancer patients in the lowest social group had a significantly worse survival prognosis compared to those in the highest group. The study thus showed that, whereas in the past the treatment of cancer patients had focused mainly on medical and scientific factors, it was now also necessary to focus on social and societal factors. At the same time, it gave clear indications that systematic treatments both improved outcomes and reduced inequalities.

The importance of the study was increased by the fact that only a little earlier, at the beginning of March 1993, the Act on the Status and Rights of Patients (785/1992) had entered into force, which had established the principle that everyone should have equal access to the good care they need, within the limits of the resources available. The law was a clear indication that the health service was beginning to break away from the tradition of hippocratic paternalism, whereby the doctor, on the basis of his status and knowledge, sovereignly determined the treatment his patient needed. Patients could influence their treatment not only by paying for it themselves, but also by challenging the doctor’s perception. They were entitled be informed in a comprehensible way about their illness and the treatment options available to them, and to make choices concerning themselves that may differ from those of their doctor. In practice, this meant that patients who were dying or in a critical condition could refuse treatment recommended by doctors responsible for treating them, in accordance with their professional ethics. This is a problematic situation, as there is a conflict not only between the patient’s right to self-determination and the doctor’s duty of care, but also, in cases such as infectious diseases, between the interests and rights of the individual and the community.

The Mass Screening Registry was tasked with evaluating the effectiveness of breast cancer screening and cervical cancer prevention screening, in addition to on-call service activities. The Mass Screening Registry collected individual-level data on women invited to and participating in cervical cancer screening (Pap test) and breast cancer mammography screening and their screening findings. In addition to variables describing the effectiveness of screening (such as participation rates and the distribution of findings), the registry assessed the population-level effectiveness of screening, i.e. the extent to which cancer incidence and mortality actually changed. The first scientific study on the effectiveness of breast cancer screening was published in 1997. It was limited to screening by the CSF, as other providers of screening services to municipalities for various reasons did not submit their screening data to the Mass Screening Registry.

In the 1990s, the Cancer Registry was characterised by biometric research oriented towards the development of analytical methods. The biometric expertise and experience of the Registry’s statisticians led to significant methodological insights and
improved analytical techniques and contributed to the success of the research. Research topics included future cancer prognosis and survival methods. A computer software package developed by Timo Hakulinen and Kamal Abeywickrama for survival analyses was implemented in dozens of research institutions around the world. The development of research methods focused on both study design (randomised health survey theory and incidence-based sampling) and analysis (statistical methods for survival and prognosis).

Over the decades, the Cancer Registry’s cancer database, largely self-trained staff and advanced methods ensured that it survived the major upheavals of the 1990s and was able to maintain its position as one of the world’s leading cancer registries. Lyly Tepo’s statement in January 1989 that it was unnecessary to draw a line between the production of Cancer Registry data and research work was still true. In the case of the Cancer Registry, the saying that the whole is greater than the sum of its parts is entirely apposite.