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

2. FINNISH CANCER REGISTRY - founded 1952 - operated by Cancer Society of Finland - 30% of budget from the state - 40 persons, one-half with university education background - 100 publications and five doctoral dissertations per year

3. Finnish Cancer Registry 40 000 clinical notifications/year – 750 notifiers – 15 % electronically 90 000 notifications from laboratories/year – 45 notifiers – almost all electronically 19 000 death certificates (11 000 deaths due to cancer) – from central statistical office – all electronically 28 000 new cancer cases/year + 15 000 basal cell carcinomas of the skin Information on more than one million cancer patients in the Registry

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

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

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

7. 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)

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

9. Why not general population sample?

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

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

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

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

17. 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

18. Finnish Mobile Health Clinic Study Smoking-adjusted SiteCasesHPV16+Risk ratio(95% CI) Oesophagus392113.1(1.6, 108) Larynx37 3 0.2(0.0, 2.0) Lip, tongue, salivary gland60 7 0.6(0.2, 2.1) Other oral29 1 0.4(0.0, 7.1) Dillner et al.: Brit.Med.J. 1995

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

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

21. Screening (mass-screening registry) cervix uteri ( 260 000 invitations/year) breast (300 000 invitations/year) colorectum (75 000 invitations/per year, not based on law) prostate (trial, largest study in the world, European collaboration, active phase terminated)

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

23. 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

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

25. 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

26. 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)

27. 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

28. 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

29. 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.

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