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Leadership changes

Through their diverse activities, cancer organisations had contributed to the fact that at the turn of the 2000s, the mortality rate from cancer in Finland was one of the lowest in the world. The age-standardised cancer mortality rate for both men and women had fallen substantially, thanks in particular to work on tobacco control. Mortality from cancer of the neck of the uterus had fallen significantly, while the increase in breast cancer mortality had stagnated. But cancer was far from being beaten, especially as the baby-boomer generation grew older and the number of cancers inevitably increased.

In the 20th century, the Cancer Registry had developed thanks to the good cooperation and mutual trust between its director Erkki Saxén and Niilo Voipio, the CSF secretary general. The leaders who succeeded them decided to maintain this tradition, but one thing changed: leadership positions more frequently than before. There was a simple reason behind the long tenure of Voipio, Saxén and other leaders in that they had come into their jobs when young, in their early 20s or 30s, and they also remained with the organisation for a long time.

By the end of the 20th century, the top positions of the CSF and the Cancer Registry, which had developed rapidly, had become so prestigious and sought-after that young people had not had time to become sufficiently qualified to compete successfully against middle-aged candidates. This led to a significant increase in staff turnover in the leading positions of the CSF and the Cancer Registry.

Liisa Elovainio retired at the end of 1986 after 16 years as CSF secretary general. She was actively involved in the WHO’s anti-tobacco campaign, as evidenced by the Tobacco Free World Award she received from the organisation in 1999, and was president of the Association of European Cancer Leagues (ECL) from 1998 to 2000 and vice president from 2001 to 2003. Elovainio also served as president of the World Congress on Tobacco or Health (WCTOH) in Helsinki in August 2003. The congress was attended by 2 200 delegates from 130 countries and featured among its speakers WHO Director-General Jong-wook Lee. The congress was a testimony to the worldwide recognition of Finnish cancer work.

Dr Harri Vertio was elected as the new CSF secretary general, after heading the Finnish Centre for Health Promotion. He had previously served as chief medical officer of the National Board of Health and the CSF and had made a significant contribution to the reduction of smoking in Finland. Like his predecessors, Vertio was active both at home and abroad and, like Lyly Tepo, could present complex issues clearly. Both Vertio and Teppo deservedly received the award of the Health Journalists association, the Hyvän Tiedon Omena (literally Good Information Apple), in 1994 and 2002 respectively, for their good assistance to journalists covering health issues.

Voipio, Elovainio and Vertio had built the Cancer Society into Finland’s largest patient and a public health organisation. The new secretary general of the CSF, Sakari Karjalainen, appointed in late autumn 2011, who had been Director General of the Department of Education and Science Policy of the Ministry of Education, faced a demanding job. His varied background as a researcher, university teacher and administrator helped him achieve good results both as a developer of CSF activities and in maintaining its contacts abroad. He was president of ECL from 2015 to 2020 and contributed to the reform of the organisation of the CSF including strengthening membership democracy, professionalising fundraising and strengthening strategic planning.

After six years as a Cancer Registry researcher at the beginning of his career, Karjalainen had, on retiring as CSF secretary general in spring 2022, been working for the CSF for 18 years. The new Secretary General appointed as of 1 April 2022 is Dr Juha Pekka Turunen, a pathology specialist, who had been head of education and deputy secretary general of the Finnish Medical Society Duodecim.

The changes of leadership of the Cancer Registry were similar in terms of length of tenure, but otherwise proved to be fairly complex and time-consuming. This was because, in addition to leadership qualities, top skills in so many areas were required of the registry’s director that ranking candidates was not a simple matter.

After 36 years of Saxén’s tenure at the helm of the Cancer Registry, Lyly Teppo announced her retirement in autumn 2001 after 13 years as director and nearly 30 years at the Registry. Teppo’s work as the first chief medical officer and thoughtful leader of the Cancer Registry during a difficult period of transition in the 1990s was an important guarantee of its continuity and positive development.

The CSF immediately advertised for the post of director of the Cancer Registry. The post was considered an interesting one, with nine researchers applying. After a rigorous selection process, five candidates were shortlisted: Anssi Auvinen, Professor of Epidemiology at the University of Tampere; Risto Sankila, Associate Professor of Cancer Epidemiology, most recently at the IARC; Harri Vainio, Head of the Cancer Unit at the IARC; and Timo Hakulinen, Director of Statistics at the Cancer Registry, Professor of Epidemiology at the University of Helsinki and Eero Pukkala, Chief Designer, Associate Professor of Epidemiology at the University of Tampere. Applicants were asked to submit their applications and also to write a short description of how they think the Cancer Registry should be developed over the coming decades. Applicants had to commit themselves to taking up the post on a full-time basis and no later than 1 October 2001.

Unlike Saxén, Lyly Tepo was asked for his opinion on the choice of his successor. In his view, the experts selected should first and foremost be asked for their opinion on the scientific qualifications of the candidates for the post of director. In addition, the selection should take into account in particular the experience of the Cancer Registry’s activities, the vision for its future development and the general suitability that could be obtained from the interviews. If only three candidates were invited for interview, Teppo suggested Anssi Auvinen and Timo Hakulinen but did not want to nominate a third.

Nominating experts to assess the applications was a difficult task because there were so few researchers in the Cancer Registry’s fields of research that it was difficult to find experts who did not have problems with delays due to joint studies with applicants. This problem was particularly acute for Nordic researchers, with whom there was close collaboration. It was decided to ask the Director-General of the National Public Health Institute of Finland, Jussi Huttus and four foreign experts, of whom only one, the English expert Professor Michel P. Coleman, Director of the Thames Cancer Registry, sent the requested statement.

On the deadline for applications it became apparent that Auvinen had not submitted the completed papers. So only t Hakulinen, Pukkala, Vainio and Sankila’s applications were sent to the experts for evaluation. As both experts had ranked Hakulinen in first place, on 21 May 2001, the CSF board unanimously elected him as the new director of the Cancer Registry, starting September 2001. Pukkala was elected as deputy director.

As Hakulinen was a statistician by training, the Cancer Registry also needed a medical officer. The board advertised for this post and appointed Docent Risto Sankila as the temporary holder of the position. It was decided that Hakulinen and Teppo would prepare a joint proposal to fill the post. The choice fell on Sankila, who had worked at the registry for 10 years, and so became its chief medical officer on 1 October 2001, responsible for matters related to cancer registration.

Matti Hakama, the director of the Mass Screening Registry, who had been working at the Cancer Registry for longer than Erkki Saxén, retired at the beginning of 2005 after 43 years of service. The CSF board announced the vacancy for the post of director with an application deadline of 15 November 2004. Three researchers applied for the position: Ahti Anttila, Associate Professor of Epidemiology, Nea Malila, Doctor of Medicine, and Pekka Nieminen, Associate Professor of Gynaecology and Obstetrics.

The Board of the Cancer Society decided to follow the same procedure for making the nomination as for the position of Chief Medical Officer of the Cancer Registry, so the position was filled by Timo Hakulinen and Matti Hakama. In addition, Risto Sankila, Chief Medical Officer of the Cancer Registry, and Eero Pukkala, Director of Statistics, were consulted.

Hakulinen and Hakama did not have an easy remit, as the director of the Mass Screening Registry was responsible for planning and evaluating the effectiveness of screening for early detection of cancer, participating in the implementation and quality assurance of screening and conducting scientific research. This required a range of skills related to both practice and planning and scientific research. The selection board had to decide which of these qualities were the most important for the performance of the task

In a joint memorandum of 23 November 2004, Hakama and Hakulinen stated that all the applicants were of great merit. Ahti Anttila’s work as head of research at the Mass Screening Registry had been absolutely central to the task applied for, and his research was of a high standard. Nea Malila, the manager of the Mass Screening Registry, was in part credited with the Alpha-Tocopherol, Beta-Carotene Cancer Prevention (ATBC) study, which had a strong population-based design and implementation component, but she was also skilled in the implementation of the colorectal cancer monitoring programme which started in September 2004. Pekka Nieminen’s overall scientific output was of high quality, but his research on cervical cancer was particularly noteworthy. He had also been responsible for reforming cervical cancer screening as new screening technologies came to challenge the old ones and coped well with the planning and fieldwork for cervical cancer screening programmes based on new technologies.

As all the applicants had a good track record, Hakulinen and Hakama decided to award the contract on the basis of their managerial qualities. The director of the Mass Screening Registry had to have the ability to both anticipate future developments and plan and be involved with screenings in such a way that they could be evaluated. Such skills were necessary because cancer screening would not necessarily stop at the three (cervical, breast and colorectal) or four (perhaps prostate) cancers of 2005, nor at the screening tests so far developed for them. Although Anttila had to be ranked ahead of the other candidates in terms of training and research, Malila and Nieminen were the most deserving in managerial terms. As Malila had a strong track record of being able to design a scientifically valid and practical screening system, she was ahead of Nieminen.

Following this reasoning, Hakulinen and Hakama proposed that Malila be elected as part-time Director of the Mass Screening Registry. The candidates who were excluded did not go along with Hakulinen and Hakama’s proposals without resistance, but submitted their own responses. It made no difference. On 17 January 2005, after further consultation with Hakamaa as an expert, the board of the CSF elected Malila as the part-time director of the Mass Screening Registry, beginning 1 February 2005. Anttila’s wish was fulfilled, as he was appointed its research director.

After Timo Hakulinen announced his retirement on 1 October 2012, it was decided to announce applications for the post of director on 13 February 2012. Apart from the language requirements, the requirements for the post included the qualification docent, knowledge of the functions and environment of the Cancer Registry and a good knowledge of cancer epidemiological research. Applicants were required to submit a free-form application in English, including a brief description of how the Cancer Registry should develop its activities over the coming decade. This should be accompanied by a CV, a list of publications and a list of the 20 studies considered most relevant to the applicant’s role.

To prepare the selection, a special working group was set up to select both the experts who would be asked to give their opinions on the candidates and the candidates whose applications would be sent to the experts. The preparatory working group was composed of professors Teuvo Tammela, Seija Grénman, Jaakko Kaprio, Jussi Huttunen and CSF secretary general Sakari Karjalainen.

Five applications were received by the deadline of 30 March 2012: professor Anssi Auvinen of epidemiology at the University of Tampere, docent Irma-Leena Notkola of the Registry Research Support Centre, and Eero Pukkala, statistical director, Risto Sankila, chief physician, and Nea Malila, director of the Mass Screening Registry, from the Cancer Registry. Of these, Auvinen, Pukkala, Sankila and Malila were shortlisted by the selection panel.

Following the statements of the selected experts, Professor John Kaldor from Australia and doctors Max Parkin and Elizabeth Davies from the UK, the working committee of the CSF board met on 20 August 2012 to discuss the selection of the new director. With the withdrawal of Anssi Auvinen’s application, the board decided to interview the remaining candidates – Pukkala, Sankila and Malila. On the basis of the interviews, the working committee decided to postpone the selection until further clarification. In particular, the qualifications required for the directorship of the Cancer Registry had to be considered, as well as the profile of the director in relation to the profile of the other senior staff of the registry. It was also necessary to consider whether any other person could be considered in addition to the applicants.

The Bureau resolved the matter at its meeting on 15 October 2012. As no new candidates had been found during the autumn, the working committee had sent additional questions to the candidates to answer and an invitation to appear for an interview before the meeting. Pukkala announced that he could not accept the invitation and sent written answers to the questions, so only Malila and Sankila attended the interview. After consulting Timo Hakuli before reaching a decision, the working committee decided to appoint Nea Malila as the new director of the Cancer Registry as of 1 January 2013.

Malila’s appointment had been such a laborious process that, after she announced his retirement at the end of 2022, the CSF leadership had to consider how to choose her successor. This time, they decided to use a nomination procedure, which was often used in universities when a researcher was recognised as an outstanding candidate. Janne Pitkäniemi, DPhil, director of statistics at the Cancer Registry and part-time professor of cancer epidemiology at the University of Tampere, was appointed Director of the Cancer Registry starting 1 December 2022.

Old and new tasks

Timo Hakulinen’s decision to run the Cancer Registry in the midst of a successful university career was based on both push and pull factors. He was frustrated by constantly dwindling resources at the University of Helsinki, which meant that instead of research and teaching, professors spent their time on administration, reporting, applications, evaluations and the like. When it no longer made sense to pursue the dual career typical of Cancer Registry directors, he opted for a full-time job at the Cancer Registry, where his work was effective and socially relevant.

On taking over the directorship of the registry at the beginning of October 2001, he did not require a long period of adjustment. As head of statistics, he had been responsible for the Registry’s human resources and financial management, among other tasks, and had been involved in the development of data protection legislation in Finland and in the EU. So these responsibilities remained in his hands. When Eero Pukkala was appointed director of statistics in 2003, he was given responsibility for many research tasks and projects in addition to the production of statistics, but Hakulinen continued to carry out many of the former tasks of the director of statistics.

With Matti Hakama continuing as director of the Mass Screening Registry and Risto Sankila soon appointed as the full-time chief medical officer of the Cancer Registry, the change of director went off without a hitch, according to Timo Hakulinen. This was helped by the fact that, like Saxén, Teppoka did not interfere in his successor’s work, which Hakulinen considered a good solution. He thought it important that each leader should be given power and responsibility without pressure from his predecessor. His aims were still the same as those of his predecessors: the Cancer Registry had to be a world-class registry and its methods and results had to be globally relevant.

The successful operation of the Cancer Registry continued to be based on its database, which contained information on cancers diagnosed in Finland since 1953. It was therefore extremely important to ensure that the information in the database on the cancer situation in the country remained as comprehensive as possible. It was the database that had shown how strongly tobacco control had contributed to the reduction in lung cancer, and care now needed to be taken to ensure that in the future it would be possible to find out how the cancer situation varied in different parts of the country and whether any risk factors might have been responsible for the changes in the cancer situation.

The prevailing legislation and reliable confidentiality measures ensured the transfer of cancer data to the Cancer Registry until the early 2000s, but tightening personal data legislation and, in particular, the pending amendment to the EU’s General Data Protection Regulation threatened to jeopardise the successful operation of cancer registries in Finland and other Nordic countries. Under Hakulinen’s leadership, Cancer Registry representatives sought to influence both domestic legislative projects, such as the Act on National Personal Data Registers Kept under the Health Care System, the Statistics Act and the Biobank Act, and the enactment of the EU Data Protection Directive with their Finnish and international partners.

This was an important task, as the Cancer Registry’s comprehensive cancer data and the research work based on it were important not only for Finland, but also for cancer prevention worldwide, as evidenced by the many international honours and awards the registry received. To celebrate the 50th anniversary of the registry, the IACR World Congress was held in Tampere at the end of June 2002, attended by nearly 300 participants from 50 countries. Ten years later, the IACR and IARC presented the Cancer Registry with an award for its work on the book World Cancer Incidence in Five Continents (CI5) at a conference in Cork, Ireland, on 17 September 2012.

Published every five years since 1962, Global Cancer Incidence in Five Continents collates national cancer statistics and sets quality criteria for cancer registries around the world. According to these standards, the following tasks are essential to the Cancer Registry process: data collection, storage and coding, quality assurance, and data life cycle management and data transfer. The Finnish Cancer Registry received an award, along with 16 other cancer registries, for having submitted cancer statistics for all ten CI5s. National population-wide cancer registries were still rare, with only seven of the award winners having such registries: Finland, Sweden, Norway, Denmark, Slovenia, Israel and New Zealand. The other ten were smaller regional cancer registries.

The close link between the Cancer Registry and the IACR was demonstrated by the fact that at the same 2012 Cork conference, Timo Hakulinen was invited to join Erkki Saxén (1985), Matti Hakama (2002) and Lyly Tepo (2002) as an honorary member of the agency, having previously served as its secretary general from 2004-08. Eero Pukkala presented the Cancer Registry’s cancer mapping methods and environmental cancer risk studies at a course there, and five years later he was invited to become an honorary member of the IACR after serving for many years as its European representative and as one of Finland’s representatives on its governing council (IACR Honorary Members).

Securing financial resources was a constant concern for Hakulinen. Even as head of statistics, he had understood that good cancer research would not be possible without adequate and long-term funding. In that sense, the Cancer Registry was like a world-class football club or opera house that can only maintain its level of excellence with good finances. Hakulinen therefore had to devote much of his energy to securing the Registry’s operation and funding.

At the beginning of the 2000s, the public support from the RAY covered about half of the Cancer Registry’s costs, with the rest coming mainly from the Cancer Foundation and from research projects, for which it received funds both at home and abroad. The Mass Screening Registry received funding from the Cancer Research Foundation, research contracts, client fees and, in 2002-07, from the RAY for evaluating the effectiveness of screening programmes. When client fees started to decrease due to competitive bidding for screening and the RAY had stopped its support, the Cancer Foundation and the Cancer Research Foundation had to take over the main responsibility for its funding.

As the Finnish economy entered a prolonged recession in 2008, due to the global banking and financial crisis, the CSF had to consider ways to lighten its spending structure. In April 2009, Hakulinen was asked to justify to the Cancer Society why it would not be possible to cut the Cancer Registry’s costs by 10-30%. According to him, even a 10% cut in costs could only be achieved by a cheese-slicer approach to salaries, social insurance costs and rent, but neither the Cancer Registry nor the Mass Screening Registry could be run with a smaller staff at that time. Already in the past, each retirement had been accompanied by a careful assessment of the division of labour and the possible need for replacement staff. If the electronic medical records system was to be implemented as planned in 2011, it could bring about changes in the Registry’s operations that could lead to savings of 10%.

Compared to the Swedish and Norwegian cancer registries, the Cancer Registry achieved the same results with about 70% less budget and staff. Finland’s strength had been its high quality and dedicated staff. If the cuts were implemented, the Cancer Registry would inevitably lose its position as one of the world’s leading cancer registries, which would also lead to a reduction in the amount of external competitive research funding it receives.

If the Cancer Registry’s costs were to be cut by 30%, it would probably go the way of Denmark, according to Hakulinen. There, the nationalisation of the Cancer Registry had led to the required savings, but also to the inability to publish statistics more recent than the date of the transfer and to the unavailability of its new data for scientific research due to quality and completeness problems. The Danish Cancer Society was forced to launch an intervention to overcome the problems of the registry.

Hakulinen’s arguments were partly successful, as the costs of the Cancer Registry decreased by only 10% in 2010. The downturn lasted for a year, as the following year the registry’s funding changed hands and preparations were made to reform its organisation.

Timo Hakulinen was himself a top-class researcher, so like Saxén he was keen to ensure that the quality of research carried out by the registry was maintained. He succeeded in this, as a 2006 study by the Academy of Finland found that its citation index was the highest of any Finnish medical research institute. The Social Security Research Institute, the National Institute of Public Health and the Radiation and Nuclear Safety Authority, not to mention the universities, were left behind.

Under Hakulinen’s leadership, the Cancer Registry’s research activities focused on the main tasks of epidemiological cancer research: identifying the population-level causes of cancer, assessing their impact and prevention, and producing a survival prognosis for cancer patients. Research was carried out both in-house and in collaboration with international organisations. In particular, the Nordic and Estonian cancer registries, the German Cancer Research Centre (DKFZ) and the US National Cancer Institute (NCI), as well as the IARC, IACR and EU networks were the main external partners. In addition to research, cooperation with the EU covered regulatory and infrastructural issues.

In the early 2000s, research continued on the role of antibodies and markers as risk factors and early diagnostic tools for cancer, statistical and data analytical methods, factors affecting cancer survival, and the effects of pollution and radiation in the living environment. One of the environmental health studies that received the most attention was the health status of the residents of houses built on a former landfill site in Myllypuro, in Helsinki. Investigations showed that these people did not have cancer in the 2000s any more than the rest of Helsinki’s population.

In the 2000s, the Cancer Registry also directed much research towards the cancer risk of people with other diseases. The links could be explained by the disease of origin itself, by underlying risk factors, which may be the same as for cancer, or by the methods and drugs used for treatment. There was also a lot of research into the effects of cancer treatments on the risk of developing a second cancer later on, which was found in about one in ten cancer patients. Research into pharmacoepidemiology was greatly aided by Kela’s medicines reimbursement register, which provided information on drug purchases from the mid-1990s onwards. Apart from Finland, only Denmark had a similar long-term database, which is why international pharmacovigilance authorities often commissioned drug-related cancer impact studies in these countries.

Eero Pukkala’s cancer maps and occupational exposure studies achieved the greatest international fame. After publishing the Cancer Map of Finland 1953-82 with Nils Gustavsson and Lyly Tepo in 1987 to celebrate the 50th anniversary of the Finnish Cancer Society, he realised the usefulness of maps in epidemiological cancer research. Epidemiology studies the prevalence and risk of cancer at the population level, so the map made it possible to show clearly how these factors vary from country to country and region to region. This observation led him to lead the production of the 2001 Cancer Atlas of Northern Europe KUVA and its new 2018 edition.

The mapping animation techniques and methods developed by the Cancer Registry under Pukkala’s leadership proved to be a good way to communicate local characteristics and trends in cancer prevalence. This presentation method was soon used to produce cancer maps in all the Nordic countries, Slovenia, the Netherlands, Belgium and other countries where the cancer registries were able to provide sufficiently comprehensive cancer data.

Another major research project led by Pukkala was the Nordic Occupational Cancer Study (NOCCA), a joint Nordic research project investigating cancer risks and incidence in different occupational groups. The project data included occupational data on around 15 million people aged 30-64 years and 2.8 million cases of cancer. Its largest study was published in 2009, but it was followed by more than 50 scientific articles. The project also involved the creation by occupational hygiene experts of the so-called Nordic Job Exposure Matrix (JEM), which contained a wealth of information on occupation-specific exposure levels and risk rates to carcinogens.

The results of NOCCA studies published well into the 2010s were the subject of spectacular publicity. For example, a wide-ranging article published in the national daily Helsingin Sanomat in July 2017 stated, even in its headline, that sedentary work is responsible for more illnesses than such things as chemicals, asbestos and stone dust combined. Daily physical exertion meant that lumberjacks had a low risk of cancer, while occupations like journalism, which involved sitting in restaurants smoking cigarettes and drinking alcohol, entailed a higher risk of cancer. Pukkala summed it up as follows: ‘If you work in a restaurant, it is easier to drink alcohol than if you work in a church or a classroom’.

In his 1999 inaugural lecture “Epidemiology against cancer”, Hakulinen asked whether classical epidemiology was reaching the end of the road, as molecular biology had opened the way to understanding how most diseases are caused and combated. He was not worried about this, as he felt that epidemiology had adapted well to the new world of genes and molecules. Of course, cancer is always fundamentally a disease of the genes, since cancer is the result of damage to the genetic material of a cell that turns a normal cell into a malignant one.

Epidemiology can investigate both the external conditions in which adverse change occurs and the external factors that promote or inhibit damage to the genetic material. Moreover, according to Hakulinen, it appeared that, although genetic research was progressing rapidly, genetic engineering would only be able to affect a small proportion of cancers that developed. Therefore, epidemiological research was still the best way to fight cancer. In this way, research also best served its paymaster, the nation as a whole.

The comprehensive database of cancers detected in Finland provided a good basis for studying the heritability of cancers. In particular, the research focused on more efficient and accurate detection of cancer. The aim was to find out the genetic background of the tumour, i.e. its inherited character. Although cancer is not hereditary, the predisposition to cancer can be inherited. However, this does not usually mean that there is a hereditary predisposition to cancer in the family, as it is estimated that only about 10% of cancers are associated with hereditary predisposition. Even these cases are caused by a combination of heredity and external factors such as environment, diet and lifestyle.

After the Academy of Finland selected the Cancer Genetics Research Group, led by Academy Professor Lauri Aaltonen, as a top research unit for 2012-17 and 2018-25, the Cancer Registry was involved in both periods. In the first period, research was conducted at the University of Helsinki and the Cancer Registry, whose cancer database served as a virtual database and research registry for research. Cancer initiation and development was studied from two perspectives: the periodic tumour susceptibility and the changes in tumours during a person’s lifetime. The primary role of the Cancer Registry was to provide the basis for the overall study design by identifying families with a higher prevalence of the cancer under investigation than the population average. Eero Pukkala was one of the team leaders of the study.

In its second season, the top unit in tumour genetics studied how a patient’s genome influenced tumour characteristics. The aim of the unit’s research was to promote the translation of genetic information into practical patient care. The unit now consisted of research teams from the University of Helsinki, the University of Tampere, the University of Cambridge and the Cancer Registry, where Janne Pitkäniemi was the lead researcher.

For example, the Cancer Registry could tell us, through its own research in the 2010s, that the number of cancers will inevitably increase as the population ages, but that the risk of cancer-related deaths will decrease significantly, and that many claims about the cancer risks of mobile phones and many occupations were mere beliefs, or at least that their risks were negligible compared to those of tobacco. Tobacco not only predisposes to lung cancer but was found to have an impact on the development of many other cancers, including mouth, throat, pancreatic and bladder cancer. There was also clear research evidence of the cancer risk of snuff use.

Publishing accurate and research-based information had become increasingly important in the internet age, with a plethora of sites online from which a seeker could find both confirmation of unreal fears and incitement to harmful treatments. The Cancer Registry fulfilled this role by continuously publishing the latest information on the state of cancer in Finland. The Cancer 2020 research report, published the same year, compiled data on new cancers, cancer deaths and patient prognosis, among other things. It also provided projections for the cancer burden by 2035.

Harri Vertio: The Finnish Cancer Registry in health policy

Expansion of screening

Matti Hakama held the position of director of the Mass Screening Registry until his retirement until January 2005, when he was succeeded by Nea Malila. Hakama, who had initiated screening for cervical cancer, breast cancer and colorectal cancer, did not leave the Mass Screening Registry altogether, but continued to visit and participate in the research on Wednesdays.

In the early 2000s, population screening for cervical and breast cancer continued in Finland, based on the Public Health Decree (802/1992). In addition to these screenings, prostate cancer and colorectal cancer screening trials were underway and were considered necessary before screening could be extended nationwide. The stages of these trials demonstrated that the transition from voluntary screening to a national screening programme was not straightforward. It could only be realised or halted after decades of trials.

As cervical and breast cancer screening had led Finland to become a pioneer in cancer screening, both because of their quality and affordability, the 1990s saw the introduction of a call for the most common cancer in men, prostate cancer, to be included in national screening. However, the problem with prostate cancer was that it was impossible to say with certainty what cancers should and should not be treated. More research was therefore needed.

In addition to its own research, the Mass Screening Registry sought to meet this challenge by joining the 1996 European Randomised Study of Screening for Prostate Cancer (ERSPC) in eight European countries, as part of which it launched a cancer screening trial in and around Tampere. By the early 2000s, the Finnish screening trial had grown to become the largest single project of the whole partnership, covering some 80 000 men aged 55-67. The results were thus not only of benefit to Finland, but also to
Europe and the rest of the world.

Like the US studies, the large-scale European study showed that prostate cancer met many of the criteria for screening. It was a major public health disease, with more than 5 000 cases and around 900 deaths per year in Finland in the early 2010s. Serum prostate-specific antigen (PSA) was easily detectable in blood samples and had good sensitivity as a marker of prostate cancer. However, other prostate diseases also increased PSA levels. Early-stage prostate cancers could be cured either by surgery or radiotherapy, with a good prognosis.

Despite these positive aspects, the Mass Screening Registry took the same view as the WHO and the UICC and did not recommend the introduction of nationwide screening for prostate cancer. Although the public health significance of cancer was high, there was not enough conclusive scientific evidence of the effectiveness of screening. This was because the PSA test was not good enough to distinguish between harmless and high-risk cancers. If screening were introduced, more new cancers would be found, but the vast majority of these would not cause any symptoms during a man’s lifetime. Once a cancer diagnosis has been made, however, it would be difficult for a doctor not to prescribe treatment, because it is not possible to how aggressive the cancer found was. As a result, many men would be subjected to treatments that not only cost a lot of money, but also cause erectile problems and urinary incontinence.

Prostate operations brought a new phase in the doctor-patient relationship. After Sakari Karjalainen’s doctoral thesis had shown that the treatment a cancer patient received was influenced not only by the skills of the doctor but also by social and societal factors, attention turned to the rights of the patient. With many doctors and clinics praising the gentle and skilful way robots operate on the prostate, and in Parliament in November 2020 141 MPs calling for the introduction of prostate cancer screening, how could it be ensured that the patient really knows what the operation is all about? If a patient was well informed about the negative impact on their quality of life associated with radiotherapy or surgery for prostate cancer and considered that this outweighed the benefit of the treatment, they could justifiably refuse the proposed surgery.

Matti Hakama: Cancer screenings

Work to develop colorectal cancer screening into a national programme began in 2001, when the CSF’s leadership commissioned Nea Malila to find out what it would take to start screening and what the programme should look like. As studies in the US, UK, Sweden and Denmark showed that screening reduced mortality, the aim was to develop a screening programme suitable for Finland, where samples could be requested and received by post. The situation was made difficult by the fact that the organisation of screening had been transferred from municipalities and associations of municipalities to local authorities without a centralised decision-making system.

Malila succeeded in designing the organisation of the colorectal cancer surveillance programme, the launch of which was approved after negotiations with representatives of Stakes, the Association of Finnish Local and Regional Authorities, the hospital districts and the Ministry of Social Affairs and Health in 2003. The aim of the programme was to evaluate the effectiveness of organised colorectal cancer screening in the target population, i.e. people aged 60-69 years. To ensure a reliable evaluation of effectiveness, the study design was scientific: the population was randomised to screening and control groups. The effectiveness of screening was measured by colorectal cancer mortality.

The start of the screening programme was voluntary for the municipalities, but after the Cancer Society of Pirkanmaa, which has a long history of cancer prevention work, started to actively promote the issue, 22 municipalities joined the colorectal cancer screening programme in 2004. Unlike previous screening programmes, the new screening was based on a stool sample taken by the patient at home.

The screening got off to an almost flying start, with 120 municipalities participating the following year. The rapid expansion created a lot of work, as municipalities needed guidance on screening. The work was interrupted for a few years when several municipalities stopped screening for financial reasons, as no targeted state support was available.

But the most important thing was the ongoing evaluation work, the scientific monitoring of the results of the screening. In 2014, the Mass Screening Registry underwent a 10-year mid-term evaluation, including an analysis of patient survival rates. At that time, it became clear that screening also had the benefit of putting patients’ care pathways in order.

The transition from voluntary screening for colorectal cancer to a nationwide screening programme took 18 years, when the Government amended the 2021 Screening Decree (752/2021) to extend cervical screening to 30-65 year olds and add colorectal cancer to the list of nationwide screenings. Screening for colorectal cancer started in 2022 for men and women aged 60-68 years nationwide, and was to be extended to cover everyone aged 56-74 years in 2031.

The victory of the Mass Screening Registry showed that the health service in prosperous Finland needed the CSF as badly in the 21st century as poor Finland did in the 1950s. Thanks to private donors, the CSF was still able to invest in the long-term research and development work required to fight cancer, which was not favoured by the current governmental scientific policy of rapid results.

In the early 2000s, the Mass Screening Registry participated in Nordic and European screening evaluation projects and in the global working group on breast cancer screening. Domestic partners included the Association of Finnish Local and regional Authorities, Stakes and the National Institute of Public Health, and research cooperation was carried out with screening centres, laboratories, hospitals and universities.

With the resurgence of cervical cancer in the second half of the 1990s, the registry began to design the introduction of its new screening methods, automated cytology and the HPV (Human Papillomavirus, HPV) test, alongside the Papa test. The HPV test was introduced in 2003 in nine municipalities in southern Finland, and by the end of 2010, six out of ten women enrolled in the cervical cancer screening programme had HPV testing as their primary test. Cervical cancer screening based on Pap and HPV testing for women aged 30-60 had reduced the incidence of cervical cancer in Finland by around 80%.

Breast cancer screening mammography for women aged 50-69 years remained the preferred screening method, as it was the only one that could be shown to have an effect on breast cancer mortality. The study of breast cancer screening in the Mass Screening Registry focused on individual and municipality-level analysis of the national mortality surveillance. The benefits of breast cancer screening in 2000 were estimated to be a reduction in breast cancer mortality of about 25%, but there were also human impacts. The disadvantages of mammography screening were false positive screening results (1-5% of the data), which caused concern and additional costs for confirmatory examinations.

The research work on the Mass Screening Registry was hampered by changes in the screening landscape and screening techniques in the early 2000s. The decentralisation of the responsibility for organising screening to the municipal level had created a patchy system, even based on annual tenders, where the quality of the screening of the winning operators varied and the transmission of test results to the Mass Screening Registry was not as smooth as before. Since 2007, breast cancer screening has been carried out mainly by private operators , with digital equipment. This created uncertainty as few scientific studies had been published on the consequences of the introduction of digital mammography.

Warnings about the risks of competitive screening seemed to have been borne out when, in the late 2010s, it was found that participation in screening had rapidly declined from 90% to just over 80%, when the minimum level should be at least 85%. Of particular concern were the large differences in screening uptake between different population groups and the general decline in screening uptake during the peak period.

In addition to its research and evaluation tasks, the Mass Screening Registry had service tasks related to the implementation of cancer screening, such as the screening invitation service, which was commissioned by the municipalities to select women for screening from the population register and also provided a small number of municipalities with invitation letters and forms. It maintained the statutory mass screening registers for cervical and breast cancer and, from 2022, for colorectal cancer, which were subject to the same regulation as the Cancer Registry. They collected data on screening invitations, screening tests and findings on an annual basis. The data in the registrys up to 1991 were used for evaluation and quality control of screening and for health policy making, and therefore a great deal of attention was paid to their technical and operational modernisation.

Years of change and renewal

After 54 years at Liisankatu 21, the Cancer Registry moved in early May 2008, together with the Cancer Society’s central office, to new offices at 9 Pieni Roobertinkatu in the Kaartinkaupunki district of Helsinki. The new premises were much better than before in terms of functionality, and the location was also convenient in terms of transport. The move took only four days, but then the problems started. The premises were found to suffer from damp and most of the staff worked in the temporary premises from February to early June 2010. After extensive cleaning and improvement work, control measurements at the end of the year showed that the indoor air quality had been restored.

The employees who moved into the new premises were unaware that the protracted move they had experienced was only a foretaste of the changes to come. The next four years saw more changes in the Cancer Registry than the 60 years that preceded them. These changes affected the registry’s funding, organisation, management and staff, data security and, again, premises.

The Cancer Registry’s nearly 60-year-long wish for access to state funding began to be partially fulfilled in 2010, when the CSF signed a contract with THL for the maintenance of the Cancer Registry, based on the act on national personal registers in the health sector (556/1989). Since 2011, the support received from the RAY was replaced by an appropriation entered in the state budget under the THL article for the technical maintenance of the Cancer Registry. While the RAY had granted Eur 691 000 to the Cancer Registry in 2010, THL’s support amounted to Eur 695 000 the following year. Despite the small increase in support, its relative share of the Cancer Registry’s costs decreased compared to the previous year.

Hopes of a clear improvement in the Cancer Registry’s financial situation soon crumbled as it became clear, that regular state support did not change the structure of the overall funding received by the Cancer Registry. The financial situation worried the leadership of the CSF so much that Timo Hakulinen and Nea Malila were invited to a meeting of their joint committee and finance committee on 19 March 2012 to clarify what part of their activities was covered by state funding or other external funding.

According to Hakulinen, the expenses of the Cancer Registry accounted for about a quarter of the CSF’s expenses, and the expenses of the Cancer Registry and the Mass Screening Registry were generally higher than the revenues. It received state aid to finance the statutory Cancer Registry, but similarly, no direct state aid of its own was directed to statutory screening for early detection of cervical and breast cancer after the end of the co-financing by the RAY in 2008. According to Nea Malila, funding for the mass screening registry continued to come mainly from the Cancer Foundation, grants and screening fees, which were steadily decreasing due to the electronification of cancer reporting and the competitive tendering process for screening.

The committee was satisfied with the reports received. It considered that in future the external research funding received by the registries should be separated from the project funding from the Cancer Foundation and the Cancer Research Foundation, so that the funding of the cancer organisations was fully visible. The committee considered it very important that the state should in future also directly support the statutory activities of the Mass Screening Registry. But this was not the case. Although the state aid received by the Cancer Registry was increased by the contribution of the Mass Screening Registry, the amount was not disclosed, as the state budget only indicates the aid received by the Cancer Registry as one sum.

With public funding was cut back at the end of the decade, the role of the CSF as a funder of the registries became even more important. While state funding through THL fell from around Eur 925 000 in 2017 to Eur 881 000 by 2021, more than half of the costs came from private sources, after the merger of the Cancer Research Foundation with the Cancer Foundation in 2013, mainly from the Cancer Foundation and from research project funders such as the European Commission.

The decline in government support for the Cancer Registry contributed to Finland losing its position as a pioneer in screening. The country’s screening programmes could not be updated to reflect the new environment: longer life expectancy and increasing cancer burden, developments in diagnostic methods and the latest international knowledge on the benefits and harms of screening. In addition to the introduction of screening for colorectal cancer, other reforms were needed.

Only one change had been made to the organisation of the Cancer Registry since 1952, when the Mass Screening Registry was established in 1967. In the early 2010s, when the CSF, under the leadership of Sakari Karjalainen, started to reform CSF work to make it more coherent and better suited to the altered environment, it was decided to change the organisation of the Cancer Registry as well. The changes were guided by the CSF’s board, which at its meeting in November 2011 set the goal of strengthening the role of the Mass Screening Registry as the national unit responsible for the development, organisation and evaluation of screening.

The reorganisation of the Cancer Registry was implemented at the turn of 2013, when the role of Nea Malila, who took over as its new director, was emphasised by no longer appointing a new director for the Mass Screening Registry. Malila’s election as director after a long tenure process meant that she broke the glass ceiling of the Cancer Registry for the second time. After being appointed Director of the Mass Screening Registry in 2004, she was the first woman to take up the director’s post at the registry and now became its first female director. The appointment was special in that the registry was now headed by someone who had not been part of Saxén’s old core team. The Cancer Registry was also very different from the one Saxén took over in 1952. While Saxén was supported by a single office manager, Malila had 32 people under her, of whom more than 20 held research posts.

The Cancer Registry had been a typical Finnish organisation in the sense that women had long been a clear majority of its staff for a long time, but there were no women at all on the management, and in the middle management, only Marja Lehtonen, the senior legal adviser, and Kirsti Louhivuori, Mass Screening Registry’s office manager. Although the relative position of women had started to improve in politics, business, foundations and academia from the 1990s onwards, emancipation had proceeded slowly in the Cancer Registry. By the end of Hakulinen’s tenure in 2012, the number of employees had risen to 33, with 19 women. But there were still only two women in managerial positions, actuary Irma Ovaska and Nea Malila, director of the Mass Screening Registry.

The situation only changed with the organisational change of the Cancer Registry in 2013, when a large number of women joined its management and supervisory positions. Tytti Sarkeala was appointed head of screening operations at the beginning of the year, and her title was changed to head of screening in 2016. Irma Ovaska continued as actuary, while Maarit Leinonen took over as medical officer at the beginning of May. Eero Pukkala remained as research director until 2018, after which he was a research specialist for a couple of years before retiring and was still involved in some of the longer-term research projects. Ahti Anttila continued as research director of the Mass Screening Registry, and Janne Pitkäniemi was appointed chief statistician of the Cancer Registry from the beginning of March 2013, with the title changing to director of statistics in 2015.

The Government Decree on Information Security in the Central Government (AsK 681/2010) obliged everyone to achieve the baseline level of information security set out in the decree by 30 September 2013. As the national cancer database, the Cancer Registry, and its constituent mass screening registries for breast and cervical cancer were under the responsibility of the THL, the CSF was subject to the requirements for the processing, classification and security of government documents. The Cancer Registry’s data security therefore needed to be improved. In October 2013, an IT Manager took over responsibility for the association’s information security, and training was provided to the staff of the Cancer Registry on data handling and general security guidelines. The Cancer Registry Information Management Plan was adopted in 2017.

Structural solutions were also needed to improve the security of the Cancer Registry, and an opportunity arose when the CSF central office began its second move in six years in May 2014. The new offices (1135 m2) found by Sponda Ltd at 22 Unioninkatu in the same Kaartinkaupunki district was almost half the size of the premises at in Pieni Roobertinkatu, but was operationally efficient and more cost-effective than before. They made it possible to meet the requirement of the data security legislation that the Cancer Registry premises had to be separated from the rest of the central office by a door. Employees and trainees working at the Cancer Registry and other keyed staff were required to sign a confidentiality undertaking before starting work. Ongoing training was provided for staff on data handling and general security protocols.

Following the decision by THL Director General Juhani Eskola in 2016 to carry out a review of the statistics and registers of the institution, the reorganisation and data protection arrangements of the Cancer Registry were also under scrutiny. The aim of the study was to examine both the possibilities for developing the Cancer Registry and to identify options for its technical maintenance. A high level working group was set up for the study, consisting of representatives of the Ministry of Social Affairs and Health, the CSF, regional cancer centres and the THL. The task was entrusted to the investigators Jussi Huttunen, Matti Sarjakoski and Jaason Haapakoski, who concluded that there was no reason to change the current administrative status of the Cancer Registry. The arguments in favour of maintaining the status quo included continuity, efficiency and economy. However, cooperation between the THL and the Cancer Registry should be developed, as this would reduce the vulnerability of the operation.

In 2016, the Cancer Registry updated its security plan , which included a list of the Registry’s security principles, and the following year security work focused in particular on preparing for the changes introduced by the EU General Data Protection Regulation. The Registry appointed Tapio Luostarinen as its data protection officer and started to publish a specific annual report on data protection. Particular attention was paid to safeguarding access to the registry’s main assets, the Cancer Registry and screening registries, which led to a major database upgrade in 2017.

Towards the end of the 2010s, the Cancer Registry’s key objectives continued to be to support external cancer research and to develop its services to be accessible to researchers and other users and responsive to the needs of different groups. Cancer researchers were supported through the development of dynamic reporting, and new features were added to the interactive cancer statistics. For cancer statistics, the Cancer Registry received demographic data by socio-economic status and education group from Statistics Finland, which were used to tabulate population and total mortality rates for cancer incidence and mortality and patient survival statistics.

The statistical methods study continued to develop methods for analysing the causal factors of cancers and the development of a calculation of regional variation in cancer survival rates. Attention was also given to better use of survey data and the increasing incidence of cancer (multiple cancers in the same person or an abnormally high number of cancers in the same family).

The Cancer Registry also developed research methods with external partners. Aalto University
published a method for estimating the latent components of the cancer incidence time series. A research project on the application of machine learning to cancer coding was continued with the Department of Computer Science at the University of Helsinki. With the University of Oulu, the aim was to find new ways to study the heritability of cancers.

The Cancer Registry’s own research focused in particular on research topics not covered elsewhere or for which the required skills were not available elsewhere. International research was directed primarily for projects where a high quality population-based survey was possible only in the Finnish environment and for which Finnish expertise and guidance was considered particularly important.

Among the most important epidemiological studies of the Cancer Registry, the Cancer Registry and THL’s joint METCA (Prospective meta cohort for cancer burden) project, which produced
up-to-date information on cancer risk factors and their implications for the future. Under the leadership of Janne Pitkäniemi, the project compiled a study cohort of 250 000 people based on population-based health surveys in the Cancer Registry, whose cancer incidence and mortality were monitored using the Cancer Registry and Statistics Finland.

The Finnish-led, joint Nordic NOCCA project, which investigated the impact of work-related links to cancer risk, funding ended in spring 2015, but studies based on its research data and methods were still being published in the 2020s. The project continued in 2018 under the name NOCCA New, funded by the Nordic Cancer Union (NCU). The new project updates previous occupational cancer estimates, but also aims to provide accurate estimates of the impact of modern work environments on cancer, estimate the causal contribution of occupational exposures to different cancers, and conduct occupational analyses of cancer survival. Sanna Heikkinen was the researcher in charge of the project, and the research team included the Finnish researchers Pitkäniemi and Pukkala.

In 2017, the Cancer Registry submitted Finnish cancer data to the CONCORD-3 study, which compared survival rates of cancer patients worldwide. This was one of the largest population-based oncology registry studies ever published, covering data from 37.5 million patients from 2000-14. The study used relative survival five years after diagnosis as a key measure of cancer treatment outcome. It showed that five-year survival rates were best in the US, Canada, Australia, New Zealand, Iceland, Norway, Sweden and Finland.

Although the results of the study must be treated with caution, as the countries’ data was not comparable, it can nevertheless be seen to have reinforced the view that Finland and the other Nordic countries were among the top countries in the world for cancer treatment. The study gave Finland no reason to rest on its laurels, as an ageing population constantly entails new challenges for the development of basic cancer research and screening. Alongside the CSF, the work was driven by the National Cancer Centre (FICAN), established in 2019

The Mass Screening Registry participated with funding from the EU Horizon 2020 programme in autumn 2015 the EU-TOPIA research project (Towards Improved Screening for Breast, Cervical and Colorectal Cancer in All of Europe), which aimed to provide information on breast, cervical and colorectal cancer screening across the EU. The research focused on the optimal implementation and scale of screening, its benefits, harms and cost-effectiveness. Finland’s role in the project was to define the parameters describing the benefits and harms, to define the socio-economic and equity dimensions of screening and to contribute to the validation of three modelling approaches for national screening.

Launched in spring 2016, the Nordscreen project aimed to develop an openly available
a web-based tool that allowed you to view a set of indicators for cancer screening.
developments in the Nordic countries and Estonia. The countries’ screening programmes differed from each other, making it difficult to compare them without a uniform set of indicators. The project, led by the Cancer Registry and funded by the NCU, initially focused on cervical cancer screening programmes, but was extended to include breast and colorectal cancer screening programmes. Ahti Anttila was the principal investigator for this project.

In 2022, there was a generational change in the leadership of the Cancer Registry’s research work when Malila and Anttila, who had led the work for many years, retired. Their successors were found in-house when Sirpa Heinävaara, who had been a senior researcher at the Mass Screening Registry, was appointed research director of the Cancer Registry on 1 May 2022 and Janne Pitkäniemi was appointed director of the Cancer Registry on 1 December 2022. Heinävaara was given a demanding task, as her job description covered the tasks of the two former research directors, i.e. the development of epidemiological and statistical research in cancer epidemiology and cancer screening. The appointment was part of a reorganisation of the Cancer Registry’s activities to respond to the changing environment and to support the strengthening of the registry’s research role.

Pitkäniemi had joined the Cancer Registry at the beginning of Nea Malila’s term as director in 2013 and had been its statistical director for the past seven years. She was the second statistician after Hakulinen to head the Cancer Registry and had developed the data-analytical research methods of the Registry’s research. He had achieved a prestigious international position as Finland’s representative on the Scientific Council of the IARC and as its chairperson.

Successful management choices and motivated and knowledgeable staff have ensured that the work of the Cancer Registry, which began in 1952, has continued uninterrupted. Its evolution from a two-person office to a world-class cancer registry and research institute was a matter of duty. In the foreword to the first edition of Cancer in Finland, published in 1982, Erkki Saxén, the founder of the Cancer Registry, said that the credit for the registry’s rise to become a respected research institute belonged to the CSF and those representatives of the National Board of Health (now the THL) who understood the necessity of the Registry and cancer research. This good outcome would not have been possible without the efficient staff and the forward-looking researchers of the Cancer Registry, to all of whom, certainly including the present ones, he wished to express his gratitude.