Overview of Swedish Quality Registries Bertil Lindahl, Professor in Cardiology, Director of Uppsala Clinical Research center.

Selective implementation with systematic follow-up Clinical studies, including RCT.s Systematic reviews / guidelines Pre-clinical research Follow up of outcome and side- effects in clinical routine, nationally and locally Implementation in clinical routine, nationally and locally Knowledge based health care Role for Quality Registries Outcome research

”I am considered to be eccentric when I officially say that if the hospitals want to be certain to improve, they have to find out what results they have. They have to analyse their results to find strong and weak points. They have to compare their results with others. These opinions will not be eccentric in a couple of years”. Ernest Amory Codman MD 1917 Quality registry – no new idea

History of Swedish Quality Registries Knäplastik; 1975 Höftplastikregistret; 1979 Kärlregistret; 1987 Oxygenregistret; 1987 Höftfrakturregistret; 1988 Pacemakerregistret; 1989 Registret för coronar angioplastik; 1990 Registret för aktiv uremivård; 1990

Swedish Quality Registries on level 1 20 on level 2 49 on level 3 27 candidates to become certified registries 73 registries covering a wide range of different interventions and diseases

Three different categories of registries 1. ”interventions”, eg. hip arthroplasty operation or heart surgery 2. ”diagnosis – based on an episode of a certain acute disease”, eg. myocardial infarction or stroke 3. ”diagnosis – chronic diseases”, eg. diabetes or rheumatoid arthritis

Currently ≈70 National Q. Registries The strategisk styrgrupp operativ beslutsgrupp. expertgrupp referensgrupper

Summary

National Quality Registries UCR Patient record Electronic Patient Record UCR Data Warehouse UCR research db Publications National Health Data Registries Biobanking

SWEDE HEART SCAAR Data entry on line by the phycians and nurses

SWEDE HEART SCAAR On-line reports

Proportion of AMI patients reaching LDL target level one year after AMI

The use of registries for Research

Cardiovascular and cancer mortality in very elderly post- myocardial infarction patients receiving statin treatment. J. Am. Coll. Cardiol. 2010;55(13): Eptifibatide is noninferior to abciximab in primary percutaneous coronary intervention: results from the SCAAR. J. Am. Coll. Cardiol. 2010;56(6): Gender perspective on risk factors, coronary lesions and long-term outcome in young patients with ST-elevation myocardial infarction. Heart. 2010;96(6): Reperfusion therapy for ST elevation acute myocardial infarction in Europe: description of the current situation in 30 countries. Cardiovascular Interventions. Eur. Heart J. 2010;31(8): Assessing the cost effectiveness of using prognostic biomarkers with decision models: case study in prioritising patients waiting for coronary artery surgery. BMJ Jan 19;340:b5606.

Different aspects Cardiovascular and cancer mortality in very elderly post- myocardial infarction patients receiving statin treatment. J. Am. Coll. Cardiol. 2010;55(13): Eptifibatide is noninferior to abciximab in primary percutaneous coronary intervention: results from the SCAAR. J. Am. Coll. Cardiol. 2010;56(6): Gender perspective on risk factors, coronary lesions and long-term outcome in young patients with ST-elevation myocardial infarction. Heart. 2010;96(6): Reperfusion therapy for ST elevation acute myocardial infarction in Europe: description of the current situation in 30 countries. Cardiovascular Interventions. Eur. Heart J. 2010;31(8): Assessing the cost effectiveness of using prognostic biomarkers with decision models: case study in prioritising patients waiting for coronary artery surgery. BMJ Jan 19;340:b5606.

Underutilization of quality registries for health economic studies

Costs were assigned using official statistical sources or market prices. Annual costs amounted to US$ 7666 per patient.

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