My years in the Finnish Cancer Registry Timo Hakulinen Finnish Cancer Registry University of Ljubljana, February 2013

FINNISH CANCER REGISTRY - founded operated by Cancer Society of Finland - 30% of budget from the state - 40 persons, one-half with university education background publications and five doctoral dissertations per year

Finnish Cancer Registry clinical notifications/year – 750 notifiers – 15 % electronically notifications from laboratories/year – 45 notifiers – almost all electronically death certificates ( deaths due to cancer) – from central statistical office – all electronically new cancer cases/year basal cell carcinomas of the skin Information on more than one million cancer patients in the Registry

ESSENTIAL INFORMATION Person –name / identifier –residence –birth date –date of death Tumour –site –date of diagnosis –histology –where to find more info

MOTIVATION FOR CANCER REGISTRATION The data are used, prerequisites: –legislature –resources (personnel, funding)

Areas of operation cancer causes prevention early detection treatment cancer policy evaluation of programs and organizations cost analyses, at least basis

Different target groups of cancer registry general population (information) authorities (description, evaluation) physicians, notifiers (feedback, methodological help) scientific community, mankind (research, materials) specific groups (follow-up, education)

Knowledge, not belief Examples: Chernobyl local drinking water mobile phones dumps

Why not general population sample?

Research conducted by registry staff collaborators & registry staff other research workers doctoral & other students international collaboration

Descriptive epidemiology Geographic variation, maps Time trends (age, cohort, period) - monitoring - prediction Spatiotemporal description: time-dependent maps Variation by socioeconomic groups

Important for cancer registries registration should be close to 100% everywhere guarantee for success of scientific studies needed

When apparent local risk elevation, check expected numbers (different standards) incidence in neighbouring or similar areas historical development incidence of other cancers

Occupation cohorts to be followed up cancer Finnish-Norwegian interview cohort (*) occupation, smoking, symptoms Tobacco factory Glass blowers Rubber industry Graphical workers Herbicide sprayers Paper industry (*) Sawmills (*) Asbestos mine (*) Glass wool control: bottles Petrochemical industry Formaldehyde Shipyard (*) PCB Radiation x-ray nurses etc (*) good information on smoking

Finnish Mobile Health Clinic Study Smoking-adjusted SiteCasesHPV16+Risk ratio(95% CI) Oesophagus (1.6, 108) Larynx (0.0, 2.0) Lip, tongue, salivary gland (0.2, 2.1) Other oral (0.0, 7.1) Dillner et al.: Brit.Med.J. 1995

Important assisting registers Population registry - central - local Causes of death Emigrations

Countrywide cancer survival Monitoring of rates Estimation of resources (basis) Baseline for planning clinical trials Studies on equity

Screening (mass-screening registry) cervix uteri ( invitations/year) breast ( invitations/year) colorectum ( invitations/per year, not based on law) prostate (trial, largest study in the world, European collaboration, active phase terminated)

Methodological research small area incidence statistics incidence, prevalence and mortality prediction methods relative survival ratios for cancer patients

Examples of research results in 2011 Descriptive epidemiology –lung cancer predictions for Finland and Poland based on alternative change scenarios of smoking habits –cancer risks of immigrants Data protection –dangers of excessive European harmonization Radiation –cancer risks after the Chernobyl accident –mobile phones and brain cancer risk Pregnancy and delivery –pregnancies, births and children’s health in former cancer patients in childhood and young adulthood Infections –relationship between HPV 6 and HSV 2 infections and risk of cervical cancer –stomach cancer risk after treatment of helicobacter pylori infection Occupation –shift work and breast cancer risk

Centralization important: In the same place - registration - statistics - research Research improves the quality of the registered data and statistics.

Finnish Cancer Registry Collaboration with - National Institute for Health and Welfare - Institute of Occupational Health - Radiation and Nuclear Safety Authority - School of Public Health, Univ. of Tampere - other universities - Nordic cancer registries - International Agency for Research on Cancer (WHO) - EU Networks - National Cancer Institute (USA) - many others

Education International courses (survival analysis, predictions, geographic analysis) Doctoral programs in Public Health (Universities, Research institutes) Professorship in cancer epidemiology (University of Tampere) Nordic Summer School in Cancer Epidemiology Doctoral dissertations (guidance, materials)

Prerequisities of good cancer registration (after Jensen et al. 1991) - Basic health services - Stability of population - Identity of individuals - Population numbers - Trained personnel - Data processing - Confidentiality measures - Follow-up - Funding - Feedback - Legal basis - Good relations - Scientific research

Discussion neutral expert body applicability of measures in Finland not necessarily the same as elsewhere real data in evaluation, not only simulated data non-experimental research important: real doses and associations between exposures influence on science policy, laws, directives and other infrastructures, e.g., biobanking stakeholder the population, not, e.g., the scientists

Finnish Cancer Registry Identifiable data delivery to researchers through application to the Ministry of Health (1 month processing time) to registered patients no delivery. They are advised to contact the reporting hospitals.

To be balanced individual’s right of privacy protection vs. Right of individual (society, mankind) to benefit from research knowledge based on data registers