My years in the Finnish Cancer Registry

Timo Hakulinen Finnish Cancer Registry

University of Ljubljana, February 2013

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

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

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-adjustedSite Cases HPV16+ Risk ratio (95% CI)

Oesophagus 39 21 13.1 (1.6, 108)

Larynx 37 3 0.2 (0.0, 2.0)

Lip, tongue,salivary gland 60 7 0.6 (0.2, 2.1)

Other oral 29 1 0.4 (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 ( 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)

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