When the whole population contributes to knowledge: On health registries in Norway Keynote at MIE2011 Oslo, 2011-08-30 Camilla Stoltenberg, MD, PhD Deputy Director General Norwegian Institute of Public Health
Agenda › History and background › Health registries in Norway › Examples › Challenges MIE 2011, Stoltenberg, slide 2
History and background
Global perspectives › A need for health information systems › Population based › Serving multiple purposes MIE 2011, Stoltenberg, slide 4
Global perspectives › Out of 128 million births in the world 48 millions are not registered (40 %) › 38 out of 57 million deaths are not registered (Two thirds) › No single UN based institution is responsible for ensuring that births and deaths are registered Quotation from Health Metrics Network, WHO GLOBAL FORUM for HEALTH RESEARCH, Beijing October 2007 MIE 2011, Stoltenberg, slide 5
Norway We register › Births and deaths › Cancer and infectious diseases › Childhood vaccinations and pharmaceuticals › Diagnoses in the health care system We publish › Health statistics › Results from research MIE 2011, Stoltenberg, slide 6
Early history › 1672: Reports to Copenhagen if something unexpected occured › 1807: Yearly reports to health authorities › 1808: Individual reports on cases of ” epidemic disease ” › 1827: Nationwide health statistics › 1853: Statistics on causes of death MIE 2011, Stoltenberg, slide 7
The Leprosy Registry › Established in 1856 by Ove Guldbergh Høegh › Aim: Surveillance, quality and epidemiology › Around 3000 patients in the 1860s › Created 1 000 beds in 5 special hospitals › 1873: Mycobacterium leprae discovered by Armauer Hansen MIE 2011, Stoltenberg, slide 8
Today Aims › Surveillance › Quality of care › Research › Administration/Management/Planning MIE 2011, Stoltenberg, slide 9
Advantages of the Nordic countries › Personal identity numbers › Public health services for all › Societal legitimacy and legislation MIE 2011, Stoltenberg, slide 10
Danish research Science 2000 MIE 2011, Stoltenberg, slide 11
Overview of registries
Legislation European › Directive 95/46/EC of the European Parliament and of the Council (EUs personverndirektiv) › European Convention for the Protection of Human Rights and Fundamental Freedoms Norway › The Personal Health Data Filing System Act (2002) (Helseregisterloven) › The Personal Data Act (2000) and more specific regulations (Personopplysningsloven og personopplysningsforskriften) › The Health Research Act (2009) MIE 2011, Stoltenberg, slide 13
Definition of health registry The Personal Health Data Filing System Act (2002) gives a broad definition: › Personal health data filing systems: filing systems, records, etc. where personal health data are systematically stored so that information concerning a person may be retrieved (hrl § 2) › Includes everything from health records in a single hospital to nationwide registries used for statistics and research MIE 2011, Stoltenberg, slide 14
Types of health registries › Central health registries › Medical quality registries › Treatment registries (e.g. health records) › Research registries (e.g. MoBa) MIE 2011, Stoltenberg, slide 15
14 Central Health Registries 1. The Norwegian Cause of Death Register 2. The Medical Birth Registry of Norway 3. Register for induced abortion 4. The Norwegian Surveillance System for Communicable Diseases and The Tuberculosis Registry 5. The Vaccination Register 6. The Norwegian Surveillance System for Resistance against Antibiotics in Microbes 7. The Norwegian Surveillance System for Infections in Hospitals 8. The Norwegian Prescription Database 9. The Norwegian Cardiovascular Disease Registry 10. The Cancer Registry of Norway 11. The Norwegian Patient Registry 12. The Norwegian Information System for The Nursing and Care Sector 13. ePrescription 14. The Registry of the Norwegian Armed Forces Medical Services MIE 2011, Stoltenberg, slide 16
One example: The Medical Birth Registry IN › Data from all births/birth clinics IN-HOUSE › Quality control › Data management › Confidentiality and data security OUT › Health statistics › Data access for all who are eligible MIE 2011, Stoltenberg, slide 17
19 national medical quality registries South-Eastern Norway Regional Health Authority › Child and youth diabetes › Neonatal medicine › Cerebral palsy › Trauma › Colorectal cancer + Prostate cancer Western Norway Regional Health Authority › Intensive care Diabetes in adults › Cleft lip and palate › COPD › MS › Arthroplasties + Hip fractures + Cruciate ligaments Central Norway Regional Health Authority › Heart infarction + Stroke › Vascular surgery Northern Norway Regional Health Authority › Back surgery › Hereditary and congenital neuromuscular diseases MIE 2011, Stoltenberg, slide 18
Other relevant databases › The National Population Registry › Sosioeconomic data: income, education, occupation, country of birth etc (Statistics Norway) › The Database of the Norwegian Labour and Welfare Services (FD-trygd) › Databases on work-related conditions MIE 2011, Stoltenberg, slide 19
A unique source of knowledge › Data can be analysed at group level for surveillance, quality control and improvement, prevention, research and administration MIE 2011, Stoltenberg, slide 20
The registry-based method › Create good studies by merging data from different registries or different timepoints within one registry › Follow a defined group over a given time period (create a ” cohort ” ) MIE 2011, Stoltenberg, slide 21
Success criterions › Complete data › Nationwide data › Big numbers › High data quality › Follow-up data › Scientific method › Possibility to compare institutions MIE 2011, Stoltenberg, slide 22
Examples
Example 1: Health statistics › Around 30 % of Norwegians will have a cancer diagnosis before 75 years of age (2007) › Around 6 % of all surgical patients have a postoperative infection; only 13,3 % before discharge from the hospital (2008) › More than 9 out of 10 children have received the recommended vaccines (2008) › 299 new cases of HIV infection diagnosed; highest number ever - Total: Around 3 000 HIV positive people (2008) › 68 % of Norwegians got medications on prescription, on average 8 deliveries - 90 % for people >70 years (2008) MIE 2011, Stoltenberg, slide 24
Example 2: Quality of care › Introduction of a new surgical method in 1993: Total mesorectal excision (TME) › Surveillance and quality control by the Colorectal Cancer Registry 1993-2004 › Study population: Curative surgery, without metastasis › N= 6192 MIE 2011, Stoltenberg, slide 25
Results › Local relapse reduced from 15 % to 9 % › Overall 5 year survival increased from 60 % to 69 % › Centralization of surgery › Reduction in radiation and chemotherapy › Annual savings: 120 million NOK MIE 2011, Stoltenberg, slide 26
Example 3: Long-term follow-up › Background Advances in perinatal care have increased the number of premature babies who survive. There are concerns, however, about the ability of these children to cope with the demands of adulthood › Methods Linkage of compulsory national registries in Norway (Birth Registry, Causes of death, FD-trygd, Statistics Norway) to identify children of different gestational-age categories who were born between 1967 and 1983 and to follow them through 2003 in order to document medical disabilities and outcomes reflecting social performance Moster D, Lie RT, Markestad T Long-Term Medical and Social Consequences of Preterm Birth N Engl J Med 2008 359: 262-273 MIE 2011, Stoltenberg, slide 27
Results The study included 903,402 infants who were born alive and without congenital anomalies. Among the survivors: › Prevalence of cerebral palsy 0.1% for those born at term versus 9.1% for those born at 23 to 27 weeks of gestation (RR for birth at 23 to 27 weeks of gestation: 78.9). › Prevalence of having mental retardation, 0.4% versus 4.4% (RR 10.3) › Prevalence of receiving a disability pension, 1.7% versus 10.6% (RR 7.5). MIE 2011, Stoltenberg, slide 28
Conclusions › Overall, children who were born preterm and survived are coping well › The risks of medical and social disabilities in adulthood increased with decreasing gestational age at birth › This is important knowledge for neonatal medicine and partly answers some of the questions of parents of preterm infants Moster D, Lie RT, Markestad T Long-Term Medical and Social Consequences of Preterm Birth N Engl J Med 2008 359: 262-273 MIE 2011, Stoltenberg, slide 29
Health registries – 10 good points 1. Reality-based – when RCTs are impossible 2. Possibility for longterm follow-up 3. Big numbers and powerful results 4. Unselected – when 100 % are included 5. Many diseases, treatments and risk factors evaluated simultaneously 6. Safe and gentle for participants 7. Protection of privacy 8. Cost effective 9. Basis for other research 10. Can secure individual rights MIE 2011, Stoltenberg, slide 30
Challenges
Perspectives › Increasing demand for knowledge › Increasing number of registries › Increasing workload and complexity › Increasing digitalisation of the society › Acceptance by society and legitimacy is crucial MIE 2011, Stoltenberg, slide 32
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