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The Epidemiologist's Dream: Denmark


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From REG 2015 Winter Summit

Published in: Health & Medicine
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The Epidemiologist's Dream: Denmark

  1. 1. ”When an entire country is a cohort” Frank, Science 2000 ”The epidemiologist’s dream: Denmark” Frank, Science 2003
  2. 2. Several important papers
  3. 3. Denmark - The epidemiologist’s dream?
  4. 4. Data landscape
  5. 5. Personal Registration Number All Danish citizens are assigned a unique civil registration number (CPR), which enables accurate linkage between these registries. Danish Civil Registration system, including: • Current and historical information on address in Denmark (municipality, street, house number) • Information on address is complete from 1971
  6. 6. Data Danish Civil Registration system, including: • Current and historical information on address in Denmark (municipality, street, house number) • Information on address is complete from 1971
  7. 7. Strengths of Danish data sources • Public health care system • Record linkage at the individual level • Time and money saving • Data-collection independent of research question • Large populations and long-term follow up • Liberal data law enabling data access • Relatively inexpensive to get data
  8. 8. Validity Positive predictive value (%)
  9. 9. Storage of administrative patient data Storage of medical patient data Use of a computer during consultation Use of a decision support system via a health portal ( E-mail consultation and renewal of medication Transfer of medical patient data to other carers Denmark has the worlds’ most “computerised” general practice Transfer of lab results from the laboratory Patients receive results from laboratory by mail
  10. 10. Sentinel Data capture PC in clinic PC in clinic Server in clinic DAMD Server NIP National Indicator Project DAMD Report server Danish healthcare data net Transferring data from DAMD til NIP DAMD generates quality feedback reports GPs have access to reports from their patient group through secure logon Quality feedback reports are generated individually for each practice on the basis of the accumulated data and available online only for the specific practice. The feedback reports includes a benchmark section which enables the GP to compare his own quality with other GPs locally and nationally. pop-up
  11. 11. Proportion of diabetes patients, percent HbA1c, median Total cholesterol , median Systolic blood-pressure, median Percent of patients investigated last year Percent of patients investigated last year Percent of patients investigated last year Percent of patients investigated last year U-Alb/Crea, median
  12. 12. Wakefield Lancet 1998 Timing of symptoms MMR and Autism
  13. 13. Vaccination cohort Registries Civil Registration system, Central psychiatric Register, National Hospital Register, Medical Birth Register, National Health Service Cohort Danish children born 1991-1998 (N= 537,000) MMR vaccinated (N=439,251) Outcome Autism (N= 316), Autism spectrum disorder (N= 422) Febrile seizures (N=17,986)
  14. 14. MMR vaccination Autism Autism spectrum disorder No Yes 1.00 (reference) 0.92 (0.68-1.24) 1.00 (reference) 0.83 (0.65-1.07) MMR and Autism
  15. 15. Does feedback improve diabetes care? • DAMD – Danish General Practice Database (Oct. 2009) ~ 506,000 patients ~ 14,500 patients with type 2 diabetes We included patients with type 2 diabetes with at least two diabetes recordings (yearly controls) from Oct. 2009 to Oct. 2010 • The number of included patients was 7988; 5805 with recorded bloodpressure 7122 with recorded cholesterol levels
  16. 16. Oct. 2009, N(%) Oct. 2010, N(%) Absolute risk reduction (95% CI) Diabetes control (HbA1c>7% and no antidiabetic medication) 235 (2.94) 127 (1.59) 1.35%(0.89-1.81), p<0.001 Bloodpressure (Systolic>130 and no antihypertensive medication) 722 (12.44) 460 (7.92) 4.51%(3.42-5.61), p<0.001 Cholesterol (>4.5 mmol/l and no cholesterol-lowering medication) 1226 (17.21) 889 (12.48) 4.73% (3.56-5.90), p<0.001 Proportion of patients with values above recommendations among the 7988 included type 2 diabetes patients (5805 with recorded bloodpressure, 7123 with recorded cholesterol levels)
  17. 17. Results • BP control rate 33.2% (CI: 32.7-33.7). • BP control rate, diabetes: 16.5% (CI: 15.8-17.3) • BP control rate, comorbidities: 42.9% - 51.4% for patients with ischemic heart diseases, cerebrovascular or peripheral vascular diseases. • Other comorbidities such as cancer, psychiatric disease or chronic obstructive pulmonary diseases, never reduced the odds of BP control
  18. 18. Challenges • Validity of the diagnoses • Missings data
  19. 19. Strengths • No selection bias • Size matters • Data is collected prosepctively
  20. 20. Data Protection in Denmark • Complies with European Union rules • Waives the need for informed consent when data are used for ”statistical and scientific purposes of significance to society” • Stipulates rules for handeling of data • Allows the use of individual information while minimizing • the spread of these data • No breaches after more than thirty years
  21. 21. Informed consent is a cornerstone in all medical research The Helsinki Declaration: ‘the health of my patient will be my first consideration’ and ‘while the goal of the primary purpose of medical research is to generate new knowledge, this goal can never take precedence over the rights and interests of individual research subjects’.
  22. 22. ”If we are using data that already exist and the research can be done with no risk for the people under study, there may well more ethical problems in not doing the research than in doing it. ”
  23. 23. Most countries record births, deaths and several diseases, and some in addition record use of medicine, treatment procedure, diagnostic data etc. Much of this is done without having informed consent. Getting informed consent after data collection will be difficult, in most cases even impossible. The existence of these data is a threat to privacy, but not necessarily in the use of the data for research.
  24. 24. No date – no knowledge – no development Quality assurance Research CME
  25. 25. Aerobec Initial analyses
  26. 26. Inclusion Initiation cohort EF Total All 1086 84294 At least 1 outcome ICS 860 61649 1 yr bsl and 1 yr outcome 854 61237 Exclude ICS/LABA FDC* 726 57780 Exclude COPD** 666 54773 No maintenance OS 661 54570 *R03AK07 or 08, **LAMA during baseline or outcome period
  27. 27. Step-up cohort EF Non-EF All 164 61125 At least 1 outcome ICS 147 51664 1 yr bsl and 1 yr outcome 147 51425 Excluding ICS/LABA FDC* 137 48364 Excluding COPD** 130 45672 No maintenance OS 130 45331 *At least 1 baseline ICS and 50% step-up at index date
  28. 28. Severe exercabations Initiation Cohort Non-EF EF Total No Severe Exer. 48197 (89%) 602 (91%) 48799 (89%) At least 1 Sev. Exer. 5712 (11%) 59 (9%) 5771 (11%) Total 53909 (100%) 661 (100%) 54570 (100%)