Weimin YE Professor Department of Medical Epidemiology and Biostatistics Karolinska Institutet

Transcription

1 Swedish Health Registers Weimin YE Professor Department of Medical Epidemiology and Biostatistics Karolinska Institutet

2 Overview of Health Registers Nationwide registers National Healthcare Quality Registers

3 National Board of Health and Welfare

4 Nationwide registers National Board of Health and Welfare Swedish Medical Birth Registry (1972) The Swedish Birth Defect Registry (1965) Dental register (2007) The Swedish Cancer Registry (1958) The National Patient Register (1964) Register on prescribed pharmaceuticals in Sweden (2005) The Cause of Death Register (1952)

5 Swedish Cancer Register Founded in 1958 Since 1961 >98% complete Linked to Cause of Death Register Survival and relative survival (indicators B1, B2, B3) usually in sicentific reports Cancer survival in Sweden developments across four decades. Talbäck M, Stenbeck M, Rosén M, Barlow L, Glimelius B. Centre for Epidemiology, The National Board of Health and Welfare, Stockholm, Sweden.

6 Swedish Birth Register Nationwide, started from , ,000 deliveries a year. Indicators H1-H5 H5 can be calculated

7 Swedish National Patient Register 1964/65 started, 1987 nationwide, 2005 outpatient care included When linked to Death Register Indicators A1-A14 A14 can be calculated Indicators C1, C3-C6 C6 can be calculated C2-AIDS to the Swedish Institute of Infectious Disease Control D1-D7 D7 can be calculated E1-E4 E4 E6 E7 can be calculated F1-F5 F5 can be calculated G1-G3 G3 can be calculated I1-I2 I2 can be calculated

8 Problems National patient register is not automatically linked to Death or Cause of Death Register One can get aggregate data (count of hospitalizations, by ICD, region, age, sex etc) by visiting their website, but survival, relative survival not possible

9 Quality registries outcome information systems Individual patient data on diagnosis, treatment and outcome Data on care, interventions, operations and technologies Complications, reoperation, death Symptoms ADL capacity, dependency on care Patient satisfaction Usually started by a curious doctor (or by a medical society) Consequently, registers are distributed among clinics throughout Sweden

10 National Healthcare Quality Registers Respiratory Diseases Childhood & Adolescene Circulatory Diseases Endocrine Diseases Gastrointestinal Disorder Musculoskeletal Disorder Diseases of the Nervous System Genitourinary Disorder Cancer Eye Disorder Other

11 Competence Centers EyeNet Sweden EyeNet Sweden was instituted in January 2003 as a centre of competence within the field of quality registries. The Swedish National Cataract Register (NCR), with its long experience of data collection and research, formed the framework of this new developing centre. UCR - Uppsala Clinical Research Center: Three physician researchers with extensive scientific knowledge and experience in research and development related to registries are in charge of the UCR and its competence center for National Quality Registries. NKO National Competence center for musculoskeletal disorders- Formed in 2003 on behalf of the Natinal Board of Helth and Welfare and the Swedish Association of Local to act as a resource for national quality, and be an aid to clinical improvement in musculoskeletal disorders. NKO provides advice and support to you working with the quality and clinical improvement as well as to individual researchers and organizations.

12 National Healthcare Quality Registers Overall 57 registers 21 selected At least 10 years old Cover >80% 1/9 2/3 Respitory Circulatory 2/3 6/11 Gastrointestinal Musculoskeletal 2/6 1/3 Nervous Genitourinary 1/2 1/4 5/9 Cancer Eye Other

13 National Healthcare Quality Registers Sw. National Cataract Reg Sw. Corneal Transplant Reg National Pain Rehabilitation Reg Follow-up in Back Surgery Sw. Knee Arthroplasty Reg Sw. National Hip Arthroplasty Reg National Hip Fracture Reg Respiratory Failure Reg Sw. Renal Reg Sw. Hernia Reg Swedish Multiple Sclerosis Registry Vascular Reg in Sw. Sw. Heart Surgery Reg Grown-Up Congenital Heart Disease Reg Reg on Cardiac Intensive Care Sw. Stroke Reg Sw. Coronary Angiography & Angioplasty Reg Sw. Rectal Cancer Reg National Prostate Cancer Reg Quality Reg in Rehabilitation Medicine Sw. Therapeutic Apheresis Reg

14 Statistics Sweden Death Register Total Population Register Education Register Censuses

15 Open comparisons and quality indicators in health care The report contained indicators that the county is compared with each other in terms of medical performance, availability, patient experience and cost of care. In 2007, published in expanded report with a total of 75 indicators. In October 2008, published the third report which contained both an update of the indicators in the previous year's reports, but also an extension of the indicator content. New indicators presented to the pharmaceutical treatment, psychiatry, orthopedics, renal ward and intensive care. The 2008 report contains data on 101 indicators.

16 Swedish Initiative for research on Microdata in the Social and Medical Sciences SIMSAM A federated database system

17 Application server Other data MEB Application server A research department Other data Location Firewalled location with local control User desktop with researcher and client software Federation server Metadata Trusted location Server Data Server hardware and software with relational DBMS functionality SCB Relational DBMS SCB data NBHW Relational DBMS NBHW data Relational DBMS Labs data A lab Secure connection between servers Authorized data access

18 Acknowledgement Rino Bellocco Christina Persson Fang Fang