Finnish Cancer Registry

The CSF is subject to the document processing, classification and data security requirements that apply to government authorities. The CSF’s data security officer, data security manager and data security working group are responsible for data security at the CSF. CSF staff regularly receive training.

The Finnish Cancer Registry’s new English-language website (https://cancerregistry.fi) was opened in early 2018. The Cancer Registry’s communications strategy was also finalised during the course of the year. The strategic communications objective is to increase public awareness of the Cancer Registry and to reach the right target audiences. The Cancer Registry wants to be the first choice when people or organisations need reliable, population-level research data on cancer and cancer screenings in Finland.

Cancer registration

The compilation of cancer cases into a national cancer registry begins with notifications, on the basis of which a case summary for statistical and research purposes is created. Statistics from Statistics Finland on the cause of death of registered individuals and their socioeconomic details (status, profession and education) are updated annually at the Cancer Registry. Possible information on time of death, place of residence, emigration and immigration are retrieved from the Finnish Population Information System.

Healthcare organisations statutorily provide the Cancer Registry with information on new cancer cases. The information is submitted by filling in an online form, as files retrieved from information systems or on a paper form. In 2018, the Cancer Registry initiated close cooperation with all university hospitals in Finland. The objective is to gradually transfer to an automated compilation of clinical cancer notifications. The new specifications were published on the code server in spring 2018. Work was started during the year to test the electronic transfer of data with two suppliers, but the number of notifications was still too small.

In total, there were more than 26 800 clinical cancer notifications registered during the year, of which nearly 12 000 were submitted with the paper form. In addition, there were some 13 000 treatment notifications. The online form was used for 7 100 cancer notifications and 7 100 treatment notifications, which means that the use of the online service has doubled compared to the previous year. However, more than half of all new cases reported still lack a clinical cancer notification. All pathology reports (more than 215 000 in total) were submitted in electronic format.

The project to reform the Cancer Registry is linked to a preliminary automatic coding of cancer cases. Already in 2018, some cancer types have been processed automatically. The automatic coding has been applied to the following cancers: colorectal cancer, breast cancer prostate cancer, kidney cancer, meningioma, hepatocellular carcinoma, cervical cancer, endometrial cancer, thyroid cancer, melanoma, pancreatic cancer, basal-cell cancer and squamous-cell skin cancer. Processing stages of joint “master data” have also been automated.

During 2018, a lot of effort was put into communicating the new data models. Work was also started to develop new ways of collecting cancer notifications.

The online form for cancer notifications was redesigned. The new format was designed to better meet the demands of haematologists, for instance. The form was also translated into Swedish and English.

Services

The Finnish Cancer Registry assists clinical, epidemiological and basic cancer research by providing ready material and guidance in conducting scientific research and analysis. The Cancer Registry also provides statistical analytics services to cancer researchers. It can also offer basic calculations on cancer incidence, mortality and patient survival.

Work was underway in 2018 to further improve the guidance and advice concerning statistics and information requests on the website. Data disclosure is the responsibility of an expert who, if necessary, will consult the responsible medical officer and other employees at the Cancer Registry.

In 2018, a total of 93 data disclosures were recorded in the data management system of the registry; nine of these were internal projects. In response to specific requests, information was also disclosed for information to authorities (six times), experts and researchers (ten times) and the media (four times). There were 37 requests for statements associated with research permits of the National Institute for Health and Welfare, and only a small proportion of them concerned the Institute’s internal permit applications.

The Cancer Registry’s list of service fees (see https://cancerregistry.fi/services/service-fees) includes both free and paid data products and services.

The cancer statistics for 2016 were completed in November 2018. Based on the feedback from the field, it was decided that the detailed statistics would still only be published in digital format. The Cancer Registry’s interactive statistics application (see https://cancerregistry.fi/statistics/cancer-statistics) allows users to view cancer statistics as graphic descriptors and tables. New features were added to the application. Users can now view incidence and mortality time series by age group and analyse the lifetime risk of developing or dying from cancer.

In 2018, the Cancer Registry published the report Cancer 2016 (see https://syoparekisteri.fi/assets/files/2018/11/vuosiraportti_2016.pdf, in Finnish only). The report provides simple graphics and tables describing the up-to-date cancer situation in Finland. The report pays special attention to prevalence, which is a key indicator of the cancer burden for the healthcare system. The statistics product is based on tabulated data at aggregate level.

The screening statistics for 2016 were published in June 2018 (see https://cancerregistry.fi/statistics/screening-statistics). Work continued to develop an online tool for examining screening data in table or graphic format, or for importing data to the desired extent to Excel for further processing.

Commissioned by municipalities, the invitation service that operates at the Mass Screening Registry handles the extraction from the population register of women who are to be invited for screening and sends their names and addresses electronically to screening service providers selected by municipalities. Women who are to be invited for cervical cancer risk screening are extracted separately. In 2018, a small proportion of municipalities still received their invitation letters and forms in PDF format, but for the last time. The municipalities were informed of the transfer to electronic submissions.

As regards the extractions made in early January, the women in the target population were linked to the municipality in which they lived at the turn of the year. Through the invitation service, the screening providers then received the names and addresses of women living in their districts. Supplementary extractions were performed in March, May and September 2018.

At year-end 2018, the Mass Screening Registry’s invitation service covered some 90% of the target population for breast cancer screening and more than 70% of the target population for cervical cancer screening.

In 2018, the services of the Mass Screening Registry were expanded beyond the invitation service. The Cancer Registry submitted to the screening service providers in these municipalities a list of personal identity codes, extracted from the population register, for women who were to be invited for screening in 2018.

In addition, the screening providers were informed that the extraction practices were to be further harmonised as of 2019.

In accordance with the Government Decree on Screenings, the extraction for breast cancer screening applies to women aged 50, 52, 54, 56, 58, 60, 62, 64, 66 and 68. In the case of cervical cancer, the extraction concerns women aged 30, 35, 40, 45, 50, 55 and 60, and if necessary also women aged 25 and 65. The new practices will ensure that the target population receives an invitation at the same age and intervals in the whole country.

Screenings

The Mass Screening Registry annually collects invitation and inspection data from about 30 cervical cancer screening laboratories and from breast cancer screenings. The information is obtained in electronic format. In 2018, most of the data from screenings were sent to the registry by the end of July. In all, about 280 000 women primarily aged 30–60 were invited for cervical cancer screening. About 370 000 women aged 50–69 were invited for breast cancer screening.

In 2018, further efforts were made to reform the database for national cancer screenings. The Cancer Registry collaborated with the National Institute for Health and Welfare to finalise the parameters and terminological definitions of the hierarchical screening model. The parameters and definitions were added to the code server maintained by the National Institute for Health and Welfare in late 2018. The definitions were presented to screening providers during a roadshow to Kuopio and Joensuu.

The overhaul of the screening database was advanced by checking parameter descriptions and transferring old data into structures that conform with the new parameters. The work was completed in 2018 in the case of cervical cancer screening data.

The relaunch of the screening programme for colorectal cancer was promoted by collaborating with screening laboratories, the postal service, gastroenterologists and gastrointestinal surgeons. The Cancer Registry also completed a background survey for the target population, as well as a data model and parameters related to the survey. The screening materials (invitations, responses, brochures) and a press release directed at the target population were completed in autumn 2018. A decision was also made on a training package for performers of colonoscopy to be offered by the Finnish Society of Gastroenterology.

The Cancer Registry contacted all municipalities that had previously participated in colorectal cancer screening, as well as a few other large municipalities and joint municipal authorities, offering them a chance to start colorectal cancer screening in 2019. It also offered the municipalities calculations of the costs of screening. By the end of the year, Tampere, Jyväskylä, Säkylä, Sauvo and Ylitornio had signed an agreement with the Fimlab screening laboratory. Oulu, too, had decided to start screening.

A five-year key project was launched in 2016 with a view to developing national steering mechanisms for cancer screening in Finland. Another aim of the project is to secure a national-level evaluation for screening tests and related further studies and treatments. In 2018, the project’s funding was extended to 2019–2020. The project’s objectives were promoted, for instance, by drafting a five-year plan for the steering and coordination of cancer screening. The plan was submitted to the Ministry of Social Affairs and Health in May. The plan recommended that Finland establish a steering group for cancer screening. The group would include representatives from the five regional cancer centres, the Finnish Cancer Registry and the Ministry of Social Affairs and Health. During the year in review, the Cancer Registry updated its website with information on screening in three languages (Finnish, Swedish and English). It also planned a training package for areas with low screening activity.

The Cancer Registry also worked on improving the web pages designed for screening providers (see https://cancerregistry.fi/screening). The first annual reports and first invitations were finalised for printing in spring 2018. Towards the end of the year, the Cancer Registry updated its website with annual reports on breast cancer and cervical cancer screening, model screening responses and brochures on screening. The website was also updated with a materials repository where users can download materials on screening services and results.

In collaboration with the advocacy specialist at the Cancer Society of Finland, the Cancer Registry drafted development goals for cancer screening. The aim is to incorporate the goals into the next Government Programme. The goals are based on the conclusions and recommendations of the screening working group of 2016 and the ad hoc expert working group of 2017 that were appointed by the Ministry of Social Affairs and Health. The development goals were presented to Members of Parliament during autumn 2018.

The Mass Screening Registry celebrated its 50^th anniversary in November and organised an open anniversary seminar at the University of Helsinki. The seminar discussed, for example, national steering of screenings and the latest annual reports, and it included speeches by junior researchers.

Statistics production and research

The Cancer Registry’s research work (https://cancerregistry.fi/publications) focuses on identification of causal factors of cancer at population level, on evaluation of the effects of such factors and on the prevention of cancer. The research is also concentrated on factors associated with early detection of cancer, statistical methods and data analytics, and the survival of cancer patients. The research activities of the Mass Screening Registry are related to the evaluation and reform of statutory screening and to exploring new methods for population-level screening. The Cancer Registry’s data resources are widely utilised in collaborative research.

During the year in review, the Cancer Registry continued to improve the support for cancer researchers by further developing the dynamic reporting of cancer. It also added new features to the interactive statistics application (see https://tilastot.syoparekisteri.fi/syovat).

To aid statistics compilation, the Cancer Registry retrieved populations from Statistics Finland based on socioeconomic status and education, and tabulated them according to population size and total mortality into statistics on cancer incidence, cancer mortality and patient survival. The integration of these data into the statistics production process was initiated during the year.

The Cancer Registry also started a text mining project focusing on electronic pathology reports. The pilot project was targeted at extracting Gleason scores from the reports. The algorithm was written and assessed based on 200 reports on prostate cancer so that both the coding and the algorithm produced a score. During testing, the algorithm produced a promising accuracy of 99% and a sensitivity of 97%.

In the case of statistical methodological study, the Cancer Registry continued to develop the estimation of the population attributable fraction and the regional variation in survival rates. Work was started to implement the statistically efficient survival rate estimation method in the production of statistics. The application of the method indicated that regional equality with respect to breast and ovarian cancer has improved and that the regional variation was greater within a single hospital district than between different districts. Computational statistical methods have increasingly been used in the statistical and research activities of the Cancer Registry. Improvements were made to the R statistical computing package (popEpi, see https://mirrors.dotsrc.org/cran) developed to enhance research activity.

In 2018, the Cancer Registry again contributed to supporting a number of external cancer studies with the help of register-based research. For example, a study conducted in collaboration with Helsinki University Hospital showed that the average life expectancy of glioblastoma patients has increased thanks to new treatment practices. For patients aged 70 and over, however, the study showed only a minor increase.

Methods were developed in cooperation with external partners. The Cancer Registry and Aalto University co-published a method for the assessment of latent components in incidence time series. A research project continued with the Department of Computer Science of the University of Helsinki on the application of machine learning in cancer coding. The Cancer Registry has also started a project with the University of Oulu to analyse the heritability of cancer through simultaneous evaluation of cancers, such as breast and ovarian cancer.

Epidemiological research projects of the Cancer Registry

The cohort study METCA (Prospective Meta Cohort for Cancer Burden), which was set up to evaluate the population attributable fraction (PAF) of cancer risk factors, has compiled a cohort of some 250 000 people to the Cancer Registry, based on population-level health surveys conducted by the National Institute for Health and Welfare. By utilising the registry and the population register, the Cancer Registry started to monitor cancer and mortality in the cohort. The aim is to produce the first PAF estimates in 2019. Within the METCA project, a study was also initiated on the pair-wise combined effects of cancer risk factors.

The unique follow-up data (FAMCAN) on young cancer patients and their close relatives were widely used. A study found a 32% lower mortality rate in young cancer patients (aged 20 and under) with parents in the highest income quartile compared to those whose parents belonged to the lowest income quartile. A manuscript was submitted for review on the relative cancer risk among family members of cancer patients who had developed cancer under the age of 40.

Thanks to a grant from the Potilaan polku fund, the Cancer Registry also started a study on cancer patients’ care pathway prior to diagnosis. The study is conducted in collaboration with researchers from the national Care Registers for Social Welfare and Health Care (Hilmo, incl. the Register of Primary Health Care Visits (Avohilmo)). In the first phase of the study, the aim is to map the care pathway of a colorectal cancer patient prior to diagnosis.

Together with the University of Helsinki and the University of Tampere, the Cancer Registry also participates in the activities of the Academy of Finland’s Centre of Excellence in Tumour Genetics Research by providing expert advice on statistical analytics with respect to cancer epidemiology and genetic epidemiology. In 2018, the Cancer Registry also developed methods related to the analysis of familial aggregation of cancer and initiated a register-based research project (CANCOMOR) to examine population-level comorbidities in cancer patients.

Screening evaluation projects in Finland

Breast cancer screening

A follow-up study was completed in 2018 on the link between breast symptoms diagnosed in screening and total mortality rate. The results showed that the preventive effect on mortality of screening, once symptoms have been detected, was not as significant as for symptom-free breast cancer cases.

Cervical cancer screening

The Mass Screening Registry completed a cohort study on the mortality rate from cervical cancer among Helsinki-based women who had been invited for screening at age 65. The results showed a markedly smaller risk of cervical cancer for women aged 65 who had been invited for screening, and particularly for those had been screened. The findings support an increase of the final screening age.

In 2018, work was also underway to process data collected from 1991–2014 on smear tests taken outside screening programmes. Testing outside screening programmes is especially common among young women. The data will be used in the evaluation of the pros and cons and cost effectiveness of all smear tests and related cancer and precursor treatments.

Colorectal cancer screening

The evaluation of the randomised colorectal cancer screening pilot project continued, and the focus was on the possible effects on lifestyle and perceived health. The results showed no effect on perceived health or lifestyle choices (e.g. physical activity, smoking or alcohol use), nor on the height-to-weight ratio. The colorectal cancers of persons invited for screening were compared to cancers in the control group, and the findings were compared between the sexes. Women had a lower risk of colorectal cancer and fewer cases of asymptomatic cancers. The cancers found in screening were more often treated successfully and the patients were less likely to need other treatments than patients in the control group. Patients in the screening group also had fewer stomas.

PSA screening test for prostate cancer

The ongoing Finnish Randomised Study of Screening for Prostate Cancer (FinRSPC) has monitored some 80 000 men for 20 years. In 2018, the study investigated, among other things, post-screening mortality from prostate cancer in relation to participation in screening. Screening was found to reduce mortality from prostate cancer only for persons who had been screened regularly. Men who had been screened three times had a significantly reduced mortality from prostate cancer, whereas men who had been screened only once or not at all had even a greater mortality rate than the control group. The result can partly be explained with self-selection bias.

Another analysis defined the effects of PSA screening, corrected for contamination and non-participation, on the risks of prostate cancer diagnosis and death during a 15-year follow-up. After the corrections, PSA screening was found to increase the risk of prostate cancer diagnosis in 32 cases (95% CI 26–39) per 1 000 men. Correspondingly, it reduced the risk of death from prostate cancer in 1.4 cases (95% CI 0–3) per 1 000 men. The cost-effectiveness analysis utilised the medicine purchases of the Social Insurance Institution and the Hilmo database of the National Institute for Health and Welfare. The treatment costs related to prostate cancer were 10% lower in the screening group than in the control group. For patients who had died from prostate cancer, however, the costs were 10% higher in the screening group than in the control group.

FinRSPC data was also used to study the significance of genetic factors for prostate cancer risk and the link between cancer risk and using various kinds of medicines.

 

International joint projects

The Cancer Registry is involved in the research project CONCORD-3, which compares global survival rates for cancer patients. A study published in early 2018 showed that, in most cancer diseases in Finland, survival rates have continued to improve and are still at the highest level in the world together with the other Nordic countries.

The Cancer Registry coordinates the Nordic Occupational Cancer Study (NOCCA), which explores associations between work-related factors and cancer risk in the Nordic countries. In 2018, NOCCA produced ten scientific, peer-reviewed articles.

The joint Nordic study on socioeconomic consequences in adult life after childhood cancer continued in 2018 between Danish, Finnish and Swedish research teams. The data compilation in collaboration with national statistics authorities has taken longer than expected.

The EUTOPIA (Towards Improved Screening for Breast, Cervical and Colorectal Cancer in All of Europe, see http://eu-topia.org) research project also continued at the Cancer Registry, with funding from the EU Horizon 2020 programme. In 2018, focus was placed on gathering data on the advantages, disadvantages and costs of screening with a view to developing a health economics evaluation for use in screening programmes for breast, cervical and colorectal cancer.

The project on cancer screening in the EU published peer-reviewed articles that dealt with the current state of screening, available invitation strategies and their links to screening coverage, the state of colorectal cancer screening, and primary screening results.

A study was published that utilised data collected within the CANCON Joint Action on the legal preconditions for cervical cancer screening in EU and EFTA countries. The study found legislative shortcomings with regard to the possibility of pooling registers together. The results of the study will also be of use in the EU’s new Joint Action iPAAC (Innovative Partnership for Action Against Cancer).

A collaboration between the Mass Screening Registry, the University of Tampere and Petrov Research Institute of Oncology, St Petersburg, led to the publication of a study on trends in breast and cervical cancer incidence and mortality in Russia. The results will contribute to the planning of cancer screenings and a national HPV vaccination programme.

Work to develop a joint Nordic screening reporting system (NordScreen) continued in 2018. Finland heads the project.