Statistical descriptions and quality reports

Statistics and quality reports’ data collection for the Finnish Cancer Registry and Mass Screening Registry.

The statistics of the Finnish Cancer Registry contain annual and time series data on cancer patients who live in Finland. The statistics provide information going back to 1953.

Health care authorities and institutions, as well as health care personnel, are bound to confidentiality provisions to statutorily provide the National Institute for Health and Welfare with cancer information on the documents and registers in its possession. Population information, migration and immigration data of cancer patients can be obtained from the Population Register Centre and death records from Statistics Finland by separate agreements.

Statistics are published once a year.
Quality report of the Finnish Cancer Registry
The cancer statistics quality report evaluates the reliability and suitability of the statistics for different uses. The quality report follows the recommendations of the Official Statistics of Finland (OSF).
Name of statistics producer

Cancer Society of Finland
Basis for compiling statistics

The registration and the compilation of the statistics are based on the Act on Health and Welfare (668/2008), the Act on National Health Registers of Health Care (556/1989), the Regulation on National Personal Data Registries of Health Care (774/1989) and the Personal Data Act (523/1999).
Relevance of statistics

Cancer statistics contain data on cancer incidence and mortality rates broken down by year, age and gender since 1953. The cancer statistics include nationwide figures as well as statistics according to specific catchment areas for cancer treatment and according to hospital district.

The statistics are intended for health care professionals, authorities, designers, researchers and citizens who need the latest information on cancer, their frequency and the expected changes.

The concepts, used classifications and cancer notification guidelines are described on the Finnish Cancer Registry website: http://www.cancer.fi/syoparekisteri/en/registration/

Methodological description of statistical research

The Finnish Cancer Registry receives cancer data from:

– hospitals and other cancer care establishments

– health care professionals

– pathology laboratories

– Statistics Finland’s death statistics

Most of the posting of hospitals, so-called clinical reports, is on paper and are stored on the electronic database as they arrive. The bulk of laboratory announcements arrive in electronic form 1-2 times a year. The updating of mortality data is done once a year, right after the published mortality statistics by Statistics Finland. Checks of the data and the database are always made when recording and updating data.

When registering cancers, the goal is to get a clinical report from a physician, a laboratory announcement, and eventually data on death with respect to each cancer. If there is no clinical cancer notification for a newly registered cancer, the missing clinical information is requested from a hospital. At the time of publication of the cancer statistics, no supplementary inquiries were made and 47% of the cancer cases in the latest statistical year 2012 lack a clinical report. Of the cancer cases in 2011, 24% did not receive a clinical cancer notification even after further questionnaires.

At the Finnish Cancer Registry notifications and Statistics Finland’s cause of death data are configured as a statistical database used for statistics and scientific research. The Finnish Cancer Registry’s database contains information since 1953 on cancers diagnosed in Finland.
Validity and accuracy of data

Data accuracy depends on the quality of the information provided. However, more than one notification is provided on the same cancer, supplementing previously obtained data and confirming cancer diagnoses. If there is conflicting information in the notices, the information obtained from the clinical statement is considered the most reliable.

In case of doubt, the information will be checked from patient care facilities. Statistics on the cause of death in Statistics Finland will be revised if necessary.

Detected errors are corrected on the database. The Finnish Cancer Registry continually complements and adjusts its material, and changes are updated in its statistics, where they appear as small changes in numbers compared to previous statistical releases.
Comparability of statistics

Statistics are published for the years 1966 – 2010 in 5 yearly periodic series, and 2011 and 2012 data as annual statistics. It is possible to make annual, periodic and regional comparisons of data.

From the start of statistical year 2012, Åland’s data is not published separately on the website. However, Åland’s data are included in countrywide figures as well as figures in the specific catchment area of Turku University Hospital.

Cancer data has been collected since 1953 in the electronic database of the Finnish Cancer Registry. The registration of cancer in Finland was begun nationwide in 1953, when the National Board of Health asked in a circular letter every doctor, hospital and laboratory in Finland to report all known cases of cancer or suspected cancer statistics. Since 1961, cancer notification has been mandatory.

Since 1990, the collection of cancer data has been based on the Medical Manual’s manual (6/1990) on cancer reporting in the Cancer Registry. Since 2008, all cancer announcements have been stored and coded using ICD-O-3 (International Classification of Diseases for Oncology, Third Edition, WHO 2000, 1st revision 2013). Previously, coding used the International Statistical Classification of 1955 (ICD-7).

When transferred to the new ICD-O-3, the codes of the old cancer cases in the database were automatically converted from ICD-7 codes from 1955 to ICD-O-3 codes by the translation matrix. The translation of the codes did not improve the accuracy of registered data, but the new codes since 2008 are more accurate than the previous ones

 

The timeliness of published information

Statistics are published annually with about a two-year delay. This delay is due to the fact that part of the cancer data is being submitted for registration with a delay of up to more than a year, and all the death data after about a year’s delay. After receipt, data is checked, errors are corrected, and the data is modified to provide a statistical database. Internationally, a two-year delay from the date of the diagnosis to the time of the publication of the statistics is considered sufficient, as it also allows comprehensive registration of the first phase of cancer treatment.
Availability and transparency of statistics

Statistics are published on the Finnish Cancer Registry’s website. There is also a link to them on the website of the National Institute for Health and Welfare. The information will also be published in the printed statistical publications of the Cancer Registry.

The National Institute for Health and Welfare may grant scientists permission to use cancer data for scientific research. For the purpose of providing information, the researcher must prepare a file description and apply for a research authorisation, based on the researcher’s research protocol, from the National Institute for Health and Welfare.

Clarity and integrity

The statistical report uses well-established international concepts and classifications. Cancer topography and morphology (tissue or cellular, histological diagnosis) are coded in accordance with International Classification of Cancer Diseases (ICD-O-3). Clinical ICD-10 is used for statistics on cancer. The time and date of death can be obtained from Statistics Finland’s death statistics in accordance with the death penalty classification officially used for that year. Municipal and survival data is updated annually from the Population Register Center. The place of residence of a person is defined as place of domicile information at the beginning of the year when cancer was diagnosed.

The forms and instructions for the Finnish Cancer Registry can be found on its website at http://www.cancer.fi/syoparekisteri/rekisterointi/.

Statistical descriptions of screening

Cervical cancer and breast cancer screening
Cervical Cancer and Breast Cancer Screening Statistics contain information on statutory cervical cancer and breast cancer screening annually and on a time series. The cervical statistics provide information since 1991 and the statistics for breast cancer do so since 1992.

 

Data from the cervical cancer and breast cancer mass screenings are reported to the Finnish Cancer Society’s Mass Screening Registry, and includes data on the screening target population, those invited and participating in screening, those referred for follow-up examinations, and the outcomes of screening and follow-up examinations.

 

The statistics are published once a year.

 

Screening for colorectal cancer

Colorectal cancer screening statistics include data on randomized colorectal cancer mass screening. The statistics provide information starting from 2004.

Data on mass screenings for intestinal cancer are reported to the Finnish Cancer Society’s Mass Screening Registry, and includes data on the screening target population, those invited and participating in screening, those referred for follow-up examinations, and the outcomes of screening and follow-up examinations.

 

The statistics are published once a year.

 

Statistical descriptions and quality reports

Cervical Cancer and Breast Cancer Screening

The quality report of cervical cancer and breast cancer screening estimates the reliability and suitability of the statistics for different uses. The quality report follows the recommendations of the Official Statistics of Finland (OSF).

 

Name of the producer of the statistics
Finnish Cancer Society

 

Basis for compiling statistics
The maintenance of the registry and the compilation of the statistics are based on the Act on the National Institute of Health and Welfare (668/2008), the Act on National Health Registers of Health Care (556/1989), the Decree on National Personal Data Registries of Health Care (774/1989), the Personal Data Act (523/1999), Health Care Act (1326/2010 ) And Government Decree on Screening (339/2011).

 

Relevance of statistics
The cervical cancer and breast cancer mass screening statistics include information on the target screening population, those invited and participating in screening, those referred for follow-up examinations, and the outcomes of screening and follow-up examinations. Data is presented for the whole country, by specific cancer treatment catchment areas and by hospital district. Cervical cancer data is presented since 1991 and breast cancer since 1992.
The statistics are intended for health care professionals, authorities, planners, researchers and citizens who need up-to-date information on national cancer screenings.

 

Methodological description of the statistical survey
Screening data has been collected from all Finnish municipalities and laboratories and screening units that invite the target population for screening and perform screening tests and follow-up examinations for screening participants.

 

According to the Act on the National Institute for Health and Welfare (668/2008), information on all stages of mass screening must be provided to the Finnish Cancer Society’s Mass Inspection Register. The information is sent for the screening invitation by the end of July of the following year. The information is collected from municipalities, screening laboratories and screened individuals, as well as from examinations and possible treatment units.

The screening information is sent to the Mas Screening Registry electronically. Incoming data and unclear cases are checked before being put on the database.

 

Validity and accuracy of data

The accuracy of the data depends on the quality of information provided by municipalities, laboratories and screening units. Registered data are compared to the statistics of the units that have been screened, the previously recorded screening data of municipalities and laboratories, and the cervical cancer and breast cancer data contained in the Finnish Cancer Registry.

 

Possible errors are corrected. Due to the notification delay, previous years are also upgraded.

 

 The timeliness of the published data
The statistics are published annually with about a two-year delay. This delay is due to the fact that the information is submitted for registration over a period of several years from the start of screening. After delivery, the information will be checked and errors are corrected.

 

Availability and Transparency of Information
Statistics are published on the website of the Mass Screening Registry. There is also a link to them on the website of the National Institute for Health and Welfare.

The National Institute for Health and Welfare may grant scientists permission to use screening data for scientific research. For the purpose of providing information, the researcher must prepare a file description and apply for a research authorisation, based on the researcher’s research protocol, from the National Institute for Health and Welfare.
Comparability of statistics
The information published annually is comparable.
Since the 1980s, data from cervical cancer screenings are on the electronic database of the Mass Screening Registry. However, registration has been nationwide since the early 2000s. Statistics are updated as required.

Age data in statistics comprises the difference between the year of invitation and the year of birth.

The concepts of cervical cancer statistics have somewhat varied in the 1990s and 2000s. The screening forms were renewed in 2005. Until 2005, the Pap classification was used to report gynaecological loose cell samples. Since 2006, mass screening samples have been reported in accordance with the internationally accepted Bethesda System 2001 (TBS 2001). Since 2003, some municipalities have been the primary screening test for HPV tests, the results of which are classified as positive or negative. The classification of tumour findings is based on the WHO’s old classification that does not distinguish between plate and cylindrical epithelial changes.

 

Clarity and integrity

Statistics include all registered screening data from the early years. Data for the 2000s practically cover the whole country.

Cervical cancer and breast cancer screening forms can be found on the website of the National Institute for Health and Welfare at http://www.thl.fi/en_US/web/en/tutkimus/palvelut/koodistopalvelus

Colorectal cancer screening

The Colorectal cancer screening quality report estimates the reliability and suitability of the statistics for different uses. The quality report follows the recommendations of the Official Statistics of Finland (OSF).
Relevance of statistics

The randomized mass screening data for colorectal cancer include information on the target population of screening, screened and participated in the screening, and on the results of screening and follow-up examinations. Data has been presented for the whole country since 2004.

The statistics are intended for health care professionals, authorities, planners, researchers and citizens who need the latest information on screening.

The screening register for colorectal cancer is a research register based on a mutual agreement between STAKES (now the National Institute for Health and Welfare, THL) and the Cancer Society of Finland on the registration of research data, and which received a license from the Ministry of Social Affairs and Health (and later from THL) (STM / 42/07/2004, THL / 619 / 5.05.00 / 2010).

 

Methodological description of the statistical survey

Screening data is collected from Finnish municipalities participating in randomized demographic screening.

In accordance with the research agreement concluded in 2003 between the Cancer Society of Finland and the then STAKES, now the national Institute for Health and Welfare, all phases of randomized mass screening for colorectal cancer should be submitted to the Cancer Society of Finland’s Mass Screening Registry.

The screening information is sent to the Mas Screening Registry database in electronic form. Unclear cases are checked from the screening unit (which operates at the Pirkanmaa Cancer Association), on screening from the municipalities or from the hospital carrying out treatment.

Validity and accuracy of data

The validity of the information itself in the screening process can be said to be good because the system for controlling the operation is common throughout the country and the data is obtained through it. Further research data (e.g. screening cancer) are compared to cancer information at the stage when the significance of the results is evaluated. Further research data is collected through local liaison officers to a screening centre, sometimes also from direct hospitals.
The timeliness of the published data

Preliminary screening statistics are published annually immediately after the end of the screening year. Final screening statistics, including further research findings are published after about a year’s delay.
Availability and Transparency of Information

Statistics are published on the website of the Mass Screening Registry. There is also a link to them on the website of the National Institute for Welfare and Health. Data is also published by the Finnish Cancer Registry.

The Finnish Cancer Registry may disclose screening information for use in scientific research. For the purpose of providing information, the researcher must apply for authorisation from the National Institute of Health and Welfare.
Comparability of statistics

The statistics are published annually, enabling annual comparison of data.

Data from colorectal cancer screenings are comprehensive from the start of population screening in the electronic database of the Mass Screening Registry. Information is updated as required.

Age data in statistics comprises the difference between the year of invitation and the year of birth.

The terms used in the statistics have been consistent throughout the follow-up period. ICD-O-3 classification is used to classify tumour findings.

 

Clarity and integrity

The statistics include comprehensive screening information since 2004, incl. Data on the number of participants, participants, screening test result and follow-up cancer and adenoma findings