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Health care and social welfare registers in Finland

Health care and social welfare registers in Finland. Development Manager Dr Mika Gissler National Research and Development Centre for Welfare and Health. Causes of death-statistics - 100 % coverage. The dead ones. Disease Registers Cancer etc Social Insurance Institution.

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Health care and social welfare registers in Finland

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  1. Health care and social welfare registers in Finland Development Manager Dr Mika Gissler National Research and Development Centre for Welfare and Health

  2. Causes of death-statistics - 100 % coverage The dead ones Disease Registers Cancer etc Social Insurance Institution Patient register (hospital episodes) - social welfare and health care institutions - 100% coverage - unique personal identifier - ICD-10 codes In-patients Specialized medical care - public sector coverage 100% - similar to in-patients Out-patients Primary health care - at present nothing except total number - in future a representative sample HIS - household surveys Not-patients HES - Health 2000

  3. Several actors collecting statistics • National Agency for Medicines (medicine) • National Institute for Occupational Health • National Public Health Institute (infectious diseases, non-communicable diseases) • STAKES (several registers and statistics) • Social Insurance Institution (benefits) • Statistics Finland (deaths, tobacco, accidents)

  4. Data protection legislation • 1989 Act on national health registers • Lists all health registers, which can be collected nationally. • 1999 Person Data Act (EU directive) • 2001 Statistical Act for STAKES • Covers statistical work in general and social welfare registers • 2004 Statistical Act • Previous from 1994 covered Statistics Finland, the current one all statistical authorities • Official statistical authorities: Statistics Finland and STAKES • Authorities producing statistics: Others

  5. Health registers including identification numbers • Cancer Register 1953 • owned by STAKES, kept by the Finnish Cancer Societies • Register of Health Care Professionals 1955 • kept by STAKES until 2000 • kept by the National Authority for Medicolegal Affairs 2001- • Register on Congenital Malformations 1963 • kept by STAKES

  6. Health registers including identification numbers • Register on Occupational Diseases 1964 • kept by Finnish Institute of Occupational Health • Register on Adverse Drug Reactions 1966 • kept by National Agency for Medicine • Hospital Discharge Register 1967 • data from tuberculosis sanatoriums since 1956, psychiatric hospitals since 1957, general hospitals since 1960, one-day treatments since 1994, outpatient visits at hospitals since 1998, samples on outpatient visits outside hospital since 2003 • complete identification numbers are available since 1969 • kept by STAKES

  7. Health registers including identification numbers • Mass Screening Register 1968 • covers cervical and breast cancer, pilot on colorectal cancer ongoing • owned by STAKES, kept by the Finnish Cancer Societies • Register of Abortions and Sterilisations 1977 • kept by STAKES • Register on Persons Exposed to Cancer- hazardous Material 1979 • kept by Finnish Institute of Occupational Health

  8. Health registers including identification numbers • Implant Register on Orthopaedic Endoprostheses 1980 • kept by National Agency for Medicine • Drug Surveillance Register 1982 • kept by National Agency for Medicine • Register of Visual Impairments 1983 • owned by STAKES • kept by the Finnish Federation of the Visually Impaired

  9. Health registers including identification numbers • Medical Birth Register 1987 • more detailed information on newborns weighing less than 1500 grams or being less than 32 gestational weeks since 2005 • kept by STAKES • Register on Infectious Diseases 1989 • Register on New Cases of Tuberculosis and Sexually Transmitted Diseases started in 1958. • kept by National Public Health Institute • Register on Dental Implants 1994 • kept by National Agency for Medicine

  10. Social welfare registers including identification numbers • Register on Pensions 1962 • kept by Finnish Centre for Pensions • Registers on Social Benefits 1964 • data on special reimbursements of medicine (since 1964), national pensions, family pensions and child disability allowances (1970), sickness allowances and reimbursed visits in private health care services (1971), rehabilitation (1978), conscripts' allowances and basic unemployment allowances (1985), family allowances and child care subsidies (1993), maternal grants, labour market subsidies and housing allowances (1994), prescribed medicine and reimbursed interventions in private health care services (1996), and students' allowances (1997). • kept by Social Insurance Institution

  11. Social welfare registers including identification numbers • Register on Social Assistance 1985 • kept by STAKES • Child Welfare Register 1991 • kept by STAKES • Discharge Register 1994 • covering social welfare institutions • kept by STAKES

  12. Exchange of information (nationally) • Register data cannot be used in decision-making on registered individuals. • Authorities: • Possible to make contracts with authorities. • Example studies: • Medication during pregnancy (STAKES, NAM, SII) • Diabetes and its complications (STAKES, SII, Statistics Finland) • Register data can be used in scientific and historic research, if the conditions mentioned in the legislation apply. NAM = National Agency for Medicine, SII =Social Insurance Institution

  13. STAKES Statistics Finland Malformation Register Medical Birth Register Cause of Death Statistics Abortion Register Basic research register, identifiable Social Insurance Institution Drug Reimbursement Register Basic research register, identifiable Special Drug Reimbursement Register Research register, Identifier anonymous STAKES STAKES bank vault Project Group Research register, Archives Identifier anonymous Medicines and Pregnancy 1996-2002

  14. Diabetes and its complications 1988-2002 Social Insurance Institution * special reimbursement for medicine 1988-2002 * prescription register 1994-2002 STAKES Hospital Discharge Register 1988 -2002 Diagnosis with diabetes 1 Linkage of identification numbers 2 4 Social Insurance Institution * special reimbursement for medicine 1988-2002 * prescription register 1994-2002 STAKES Research register for persons with diabetes (IDs) 5 3 Statistics Finland Cause-of-Death Register 1988 -2002 STAKES * Hospital Discharges * Births * Visual Impairments 1988-2002 8 6 7 File with identification numbers FINAL RESEACH REGISTER Encrypted data 9 10

  15. Exchange of information (internationally) • Research data can be delivered to other countries (always without ID-numbers) • Administrative health data is not exchanged routinely (excl. death certificate, SII) • Identification of foreigners in the Finnish health registers • Municipal code '200' or no complete ID-number. • Hospital registers: Country for foreigners • Data linkages possible with Central Population Register or Registers at Statistics Finland

  16. Hospital discharges 2003 N Identification number Incomplete Complete Code '200' 1.173 712 1.885 Other code 3.892 1.348.393 1.352.285 5.065 1.349.105 1.354.170 712=‘Finns’ returning back to Finland for care 0.05% 1173=‘Foreigners’ receiving care in Finland 0.09% 3892=‘Foreigners’ living permanently in Finland 0.29%

  17. ‘Foreigners’ receiving hospital care in Finland 2003 (N=1173)

  18. ‘Finns’ returning back to Finland for care (N=712)

  19. Health of foreigners in Finland • Medical Birth Register & Abortion Register done, Hospital Discharge Register next year • Data on birth country, language, nationality, information on migration to Finland • Decision rules how to determinate residents with foreign background • Final data without ID-numbers • No information: • Linkage: Immigrant, asylum seeker, refugee, or Finn! • Register: Visitor, service seeker, contract with Finland

  20. Induced abortions according to yearand age, Finland 1994-2002

  21. Proportion of induced abortion of pregnancies (births + abortions)1999-2001, %

  22. Use of data in research is possible • Register data can be used in scientific and historic research, if the conditions mentioned in the legislation apply. • Data protection authority has to be consulted. • Even identification numbers can be delivered to the researchers (excluding social registers), if additional data linkages are needed.

  23. Up to 100 data permissions per year for research use of our registers

  24. Would you say that the level of data protection law in your country is…? Source: Eurobarometer 60.0/2003.

  25. The data protection law is interpreted and applied for more rigorously in your country. Source: Eurobarometer 60.0/2003.

  26. Challenges in the near future • Information 2005 -working party (2002-2003) • set by the Ministry of Social Affairs and Health • four subgroups: • Health care and social welfare services • Benefits in cash • Citizens’ welfare • Citizens’ health • The new health information system includes routine statistics, surveys and ad hoc studies.

  27. Challenges in the future • Improving statistics on • primary health care statistics • now only aggregated number of visits available • health care personnel statistics • now only number of licensed health care personnel • seamless chains of care • regional pilot projects on-going • electronic transfer of data • Social welfare and health indicator bank

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