Finland: Difference between revisions
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=== Database: Finnish Cancer Registry === | === [[Database: Finnish Cancer Registry (Finland)]] === | ||
{{#subobject:Finnish Cancer Registry | {{#subobject:Finnish Cancer Registry | ||
Revision as of 12:14, 6 November 2023
Go back to Cancer Centers list.
Cancer Centers
Helsinki University Hospital Comprehensive Cancer Center
Turku University Hospital Cancer Centre
TAYS Cancer Centre Tampere University Hospital
Cancer Center of Kuopio University Hospital
Healthcare System
Finland operates a decentralized, tax-funded universal healthcare system. The system is primarily managed by the Ministry of Social Affairs and Health at a national level, but about 300 municipalities hold significant responsibility for organizing and providing health services to their residents.
All Finnish citizens and permanent residents have access to comprehensive healthcare services through the municipal health care services and the National Health Insurance (NHI) scheme, managed by the Social Insurance Institution (SII). The municipal health care services cover all necessary health services at all levels, while the NHI funds healthcare-related travel costs, outpatient medications, and certain private sector services. Certain groups, such as asylum seekers without a residence permit, undocumented immigrants, and foreign temporary workers, have access to essential emergency care.
Healthcare benefits under the Finnish system include preventative care, primary and specialized medical care, mental health services, dental care, and rehabilitation services. Access to these services requires residency in Finland, with some services having waiting times for non-emergency cases.
Finland maintains a robust system of electronic health records (EHR), managed by healthcare providers and integrated into a national data repository known as Kanta. Health registries and claims data provide comprehensive, anonymized data on health conditions and health services utilization. Approximately 75% of health expenditure is publicly funded, and ongoing reforms aim to streamline sector structures and financing.
Administrative or Claims Data
Database: Care Register for Health Care
Primary purpose: Collect data on the activities of health centers, hospitals, and other institutions providing inpatient care and on the clients treated in them as well as on home-nursing clients for the purposes of statistics, research, and planning.
Sponsor, manager or home institution: Finnish Institute of Health and Welfare.
Type of information: Data Dictionary: Care Register for Health Care. More information about the data contained in the dataset [1].
Source of Information: Data is sent by healthcare providers nationwide.
Data level: Patient level.
Number of Records: Unknown.
Date Range: 1969 onwards.
Cancer Areas of Interest: Unknown.
Data Access: Not publicly available [2]. Instructions to request data for dataset [3].
Contact information: Information [4].
Database: Kelasto - Medical Benefits
Primary purpose: Promote the use and exchange of information by compiling key statistical information, in this case, information about insurance claims.
Sponsor, manager or home institution: Kela (in English: The Social Insurance Institution (SII)); Parliament.
Type of information: The number of persons who received compensation from specialists' fees; The number of reimbursed specialist visits. The figures also include the number of doctor's opinions and prescriptions (not made through pharmacies); Euro amounts of fees collected from specialist visits and medical reimbursements paid for them; Compensation percentage. The number tells the percentage paid to the insured as health insurance compensation of the collected medical fees; Ratio cost (=charges collected) per visit; Medical Specialties, Reference period, and geographical focus.
Source of Information: Healthcare customers send data from claims for benefits and job applications.
Data level: National, regional, and hospital district level.
Number of Records: Unknown.
Date Range: 2016 onwards.
Data access: Partially publicly available [5]. Instructions to request data for restricted content [6].
Contact information: Information [7].
Registries
Database: Finnish Cancer Registry (Finland)
Primary purpose: Assess the causes and impacts of cancer burden and the effectiveness of cancer screening programmes in the population.
Sponsor, manager or home institution: Cancer Society of Finland.
Type of information: Data on cancer screenings, cancer incidence, deaths due to cancer, risk of developing cancer, persons alive with past diagnosis, prognosis of cancer patients.
Data Dictionary: Finnish Cancer Registry
Data Dictionary: Cervical Cancer Screening
Data Dictionary: Breast Cancer Screening
More information about the data is contained in the database [8].
Available type of information: Cancer incidence, deaths due to cancer, risk of developing cancer, persons alive with past diagnosis, prognosis of cancer patients; sorted by sex, region, cancer site, year, and values.
Source of Information: Health organizations provide information on every case or strong suspicion of cancer detected in Finland to the Cancer Registry of the National Institute for Health and Welfare, which is maintained by the Finnish Cancer Society.
Data level: Patient level.
Available data level: Regional level.
Number of Records: Unknown.
Date Range: 1953 onwards.
Cancer Areas of Interest: Cancer Areas of Interest: Finnish Cancer Registry.
Data access: Partially publicly available [9]. Instructions to request data for restricted content [10].
Contact information: Information [11].
Database: Statistics Finland - Cause of Death
Primary purpose: Provide publicly available information on causes of death.
Sponsor, manager or home institution: Statistics Finland; Ministry of Finance.
Type of information: Data Dictionary: Causes of death - research data.
More information about the data contained in the database [12].
Available type of information: Deaths by underlying cause of death, age, sex, and county.
Source of Information: Death certificates and data from the Population Information System.
Data level: Patient level.
Available data level: Regional level.
Number of Records: Unknown.
Date Range: From 1969 onwards.
Cancer Areas of Interest (ICD-10): Neoplasms (C00-D48); malignant neoplasms (C00-C97); malignant neoplasm of lip, oral cavity and pharynx (C00-C14); oesophagus (C15); stomach (C16); colon (C18, C19); rectum, anus and anal canal (C20-C21); primary malignant neoplasm of liver and intrahepatic bile ducts (C22); malignant neoplasm of pancreas (C25); larynx, trachea, bronchus and lung (C32-C34); malignant melanoma of skin (C43); breast (C50); cervix uteri (C53); uterus (C54-C55); ovary (C56); prostate (C61); kidney (C64); bladder (C67); lymphoid, haematopoietic and related tissue (C81-C96), other malignant neoplasms; other neoplasms (D00-D48).
Data access: Partially publicly available [13]. Instructions to request data for restricted content [14].
Contact information: Information [15].
Database: Register of Primary Health Care Visits
Primary purpose: Provide data on outpatient primary care for statistics, research, development and planning, and also to monitor infectious diseases, injuries, and health examinations.
Sponsor, manager or home institution: Finnish Institute of Health and Welfare.
Type of information: Data content of the register: Service provider in the service event; client contact by client; assessment of the need for treatment; appointment data; data on the content of the service event, such as reason for visit, procedures, and follow-up care. Data content of the care notification to the Register of Primary Health Care Visits - Basic data about the service event: Client's personal identity number (encrypted in the register); Client's municipality of residence; Postcode of the client's place of residence; Service provider; Service unit of the service provider; Event record code. Data on contact type and assessment of the need for treatment: Date and time of contact; Date and time of assessment of the need for treatment; Occupation (person assessing the need for treatment); Urgency of care; Type of visit; Outcome of assessment of the need for treatment. Appointment data: Date and time of appointment booking; Date and time of booked appointment; Occupation; Service type; Contact type. Service event data: Date and time, service event starting time; Date and time, service event closing time; Occupation (person delivering care); Service type; Contact type; Client group; Urgency; Type of visit; First visit; Reasons for visit/diagnoses; External cause (accidents); Type of accident; Procedures and interventions; Vaccination data and medication data; Dental health care, DMFT index; Dental health care, CPI index. Follow-up care: Service event cancellation; Reason for service event cancellation. More information about the data contained in the dataset [16].
Source of Information: Data is sent by healthcare providers nationwide.
Data level: Patient level.
Number of Records: Unknown.
Date Range: 2008 onwards.
Cancer Areas of Interest: Unknown.
Data access: Partially publicly available [17]. Instructions to request data for restricted content [18].
Contact information: Information [19].
Database: Sotkanet Indicator Bank
Primary purpose: Offer information about key population welfare and health data.
Sponsor, manager or home institution: Finnish Institute of Health and Welfare.
Type of information: The database contains the following indicators related to cancer: Cancer index, age-standardized info ind. 245 Cancer index, not age-standardized; Entitled to special refunds on medicines for cancer 31.12., age-standardized population share(%); Entitled to special refunds on medicines for cancer 31.12., as % of total population; Five-year relative survival rate of bowel cancer patients, %; Five-year relative survival rate of breast cancer patients, %; Five-year relative survival rate of cervical cancer patients, %; Proportion of women invited to breast cancer screening (mammography) who attended, %; Proportion of women invited to cervical cancer screening (smear test) who attended, %.
Source of Information: Cancer statistics (Finnish Cancer Registry), National Health Index (Kela and THL) and Morbidity index (THL). The source for the individual indicator can be found by clicking on "info ind xxxx", next to the name of each indicator.
Data level: Hospital level.
Number of Records: Unknown.
Date Range: 1990 onwards.
Cancer Areas of Interest: Unknown.
Data access: Publicly available [20].
Contact information: Contact information [21].
Databases for Clinical Trials, Surveys and Biobanks
Survey/Biobank: FINRISK
Primary purpose: Store the sample collection and data information of participants from the FINRISK survey. The purpose of the survey was to assess the risk factors of chronic diseases, including cancer.
Sponsor, manager or home institution: THL Biobank.
Type of information: Survey answers about cancer diagnosis and smoking habits or exposure, as well as many other survey answers for risk factors. There's also a sample collection from the participants at the THL Biobank. Questionnaires information [22].
Data level: Respondent level.
Number of Records: About 35,000.
Date Range: 1972-2012.
Cancer Areas of Interest: Unknown.
Data access: Partially publicly available [23]. Instructions to request data for restricted content [24].
Contact information: Information [25].
Survey/Biobank: National FinHealth 2017 Study
Primary purpose: Store the sample collection and data information of participants from the National FinHealth 2017 Study survey. The purpose of the survey was to produce up-to-date information on health, health behavior, functional capacity and well-being of adults.
Sponsor, manager or home institution: THL Biobank.
Type of information: Survey answers about cancer diagnosis and smoking habits or exposure, as well as many other survey answers for health information and behavior. There's also a sample collection from the participants at the THL Biobank. More information [26].
Data level: Respondent level.
Number of Records: About 6,600.
Date Range: 2017.
Data access: Data is not publicly available [27]. Instructions to request data for restricted content [28].
Contact information: Information [29].
Survey/Biobank: Finnish Mobile Clinic Examination
Primary purpose: Store the sample collection and data information of participants from the Finnish Mobile Clinic Examination survey. The purpose of the survey was to monitor population health, need for treatment, functional abilities, and collect data for epidemiological search.
Sponsor, manager or home institution: THL Biobank.
Type of information: Medical history, smoking habits, and other health information. There's also a sample collection from the participants at the THL Biobank.
Data level: Respondent level.
Number of Records: About 60,000.
Date Range: 1965-1980.
Cancer Areas of Interest: Unknown.
Data access: Partially publicly available [30]. Instructions to request data for restricted content [31].
Contact information: Information [32].
Survey/Biobank: Health 2000 and 2011
Primary purpose: Store the sample collection and data information of participants from the Health 2000 and 2011 survey. The purpose of the survey was to gather data on the most important public health problems in working-aged and aged population, their causes and treatment as well as on the population’s functional capacity and working capacity.
Sponsor, manager or home institution: THL Biobank
Type of information: Medical history, smoking habits, and other health information. There's also a sample collection from the participants at the THL Biobank [33].
Data level: Respondent level.
Number of Records: About 13,000.
Date Range: 2000 and 2011.
Cancer Areas of Interest: Unknown.
Data access: Partially publicly available [34]. Instructions to request data for restricted content [35].
Contact information: Information [36].
Study/Biobank: ATBC Study
Primary purpose: Store the sample collection and data information of participants from the study "The alpha-tocopherol, beta-carotene lung cancer prevention study: Design, methods, participant characteristics, and compliance.
Sponsor, manager or home institution: THL Biobank.
Type of information: Detailed information about participants, including physical description, smoking habits, health record, and others. There's also a sample collection from the participants at the THL Biobank [37].
Data level: Patient level.
Number of Records: About 29,000.
Date Range: 1985-1993
Cancer Areas of Interest: Lung cancer.
Data access: Partially publicly available [38]. Instructions to request data for restricted content [39].
Contact information: Information [40].
Survey: FinSote - Lifestyle and Risk Factors
Sponsor, manager or home institution: Finnish Institute for Health and Welfare
Primary purpose: The FinSote National health survey aims to monitor the changes in the population's well-being and health.
Type of information: Proportion of daily smokers, the proportion of daily users of e-cigarettes containing nicotine, and Proportion of daily users of tobacco products or e-cigarettes containing nicotine.
Data level: National level.
Access to information: Access information [41].
Clinical Practice Guidelines
Finnish Medical Association Duodecim Guidelines
Sponsor, manager or home institution: Duodecim of the Finnish Medical Society and other institutions.
Primary purpose: To provide independent national treatment recommendations based on research evidence.
Type of information: Treatment recommendations; Epidemiology and etiology; Prevalence classification and histological classification; Diagnostics; Monitoring; Quality of life of patients of prostate, lung, oral cancer and palliative care and hospice care recommendations.
Access to information: List of guidelines [42].
Latest Policymaking Initiatives
Report: Finnish Cancer Registry
Sponsor, manager or home institution: Finnish Cancer Registry; Finnish Institute for Health and Welfare.
Primary purpose: To maintain a comprehensive national registry of all diagnosed cancer cases and serve as a statistical and epidemiological research institute.
Type of information: Screenings programs, annual cancer reports with new cancer cases, the number of cancer deaths, cancer prevalence and patient survival.
Data level: National level.
Access to information: Access Information [43].
Report: Ministry of Social Affairs and Health
Sponsor, manager or home institution: Ministry of Social Affairs and Health.
Primary purpose: To conduct a preliminary investigation for establishing a national quality registry for palliative care and end-of-life care in Finland.
Type of information: Information about the preliminary investigation for establishing a national quality registry for palliative care and end-of-life care in social and healthcare settings.
Data level: National level.
Access to information: Access Information [44].
Report: EU Country Cancer Profile 2023
Sponsor, manager or home institution: OECD and European Commission.
Primary purpose: To provide reliable data on cancer prevention and care, identifying trends, disparities, and inequalities among EU Member States and regions to guide interventions under Europe's Beating Cancer Plan.
Type of information: National cancer burden; Cancer incidence and mortality; Risk factors for cancer; Early detection programs (screenings); Cancer care performance, The impact of COVID-19 on cancer care.
Data level: National level.
Access to information: Access Information [45].
Compilation: ESMO Patient Guides
Sponsor, manager or home institution: European Society for Medical Oncology
Primary purpose: To translate complex medical language into understandable information for patients.
Available guides: Coping: A patient's guide.
Type of information: Information on each guide varies for each cancer type. Generally, guides provide definitions, explanations of causes, diagnosis, treatment, treatment options, care after treatment, among others.
Access to information: List of guides [46].
Patient Association: Finnish Prostate Cancer Association
Primary purpose: To support and advocate for prostate cancer patients and their families, offering information, counseling, and peer support while striving to improve their quality of life and treatment outcomes.
Contact information: Information [47].
Patient Association: Finnish Throat and Mouth Cancer Association
Primary purpose: To provide support, rehabilitation, and information to individuals with throat and mouth cancer and their families, including adaptation training, peer support, speech rehabilitation, and financial assistance.
Contact information: Information [48].
Patient Association: Colores, the Finnish Colorectal Cancer Association
Primary purpose: To provide support, information, and advocacy for colorectal cancer patients and their families, as well as to collaborate with healthcare organizations, promote preventive efforts, research, and improvements in the situation of colorectal cancer patients.
Contact information: Information [49].
Patient Association: Sylva Ry
Primary purpose: To provide practical information, support, a community of peers, and professional assistance to children, teenagers, young adults, and their loved ones affected by cancer, as well as to serve as an advocacy organization influencing policy and providing research information on the situation of cancer patients and their families.
Contact information: Information [50].
Patient Association: The Breast Cancer Association - Europa Donna Finland
Primary purpose: To enhance the well-being and quality of life, both physically and psychologically, for individuals affected by breast cancer, while providing information, advocacy, and support for breast cancer patients.
Contact information: Information [51].
Patient Association: Suomen Söpäpotilaat
Primary purpose: To advocate for the interests of cancer patients, secure support during treatment and rehabilitation, and reduce the societal impact of cancer while providing reliable information about cancer diseases and their treatment.
Contact information: Information [52].
