Transcript Finnish Cancer Registry

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
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name / identifier
residence
birth date
date of death
• Tumour
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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
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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
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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
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expected numbers (different standards)
incidence in neighbouring or similar areas
historical development
incidence of other cancers
Occupation cohorts to be followed up cancer
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Finnish-Norwegian interview cohort (*) occupation, smoking, symptoms
Tobacco factory
Glass blowers
Rubber industry
Graphical workers
Herbicide sprayers
Paper industry (*)
Sawmills (*)
Asbestos mine (*)
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Glass wool control: bottles
Petrochemical industry
Formaldehyde
Shipyard (*)
PCB
Radiation x-ray nurses etc
(*) good information on smoking
Finnish Mobile Health Clinic Study
Site
Cases HPV16+
Smoking-adjusted
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
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Descriptive epidemiology
– lung cancer predictions for Finland and Poland based on alternative change scenarios of
smoking habits
– cancer risks of immigrants
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Data protection
– dangers of excessive European harmonization
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Radiation
– cancer risks after the Chernobyl accident
– mobile phones and brain cancer risk
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Pregnancy and delivery
– pregnancies, births and children’s health in former cancer patients in childhood and
young adulthood
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Infections
– relationship between HPV 6 and HSV 2 infections and risk of cervical cancer
– stomach cancer risk after treatment of helicobacter pylori infection
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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