1. CDC Site Visit at Emory CHD Surveillance Cooperative Agreement Data Quality & Validation September 25, 2013 Wendy Book, MD

2. Purposes of Quality Control Completeness Accuracy

3. Data Quality & Validation Compare consistency of data for patients who appear in two or more data sources – Examples : CHOA and Sibley Heart Center, PCS EHC Data Warehouse and Emory CHFT db Compare predicted age/race distribution to actual Sampling (certain diagnostic groups vs. percentage of all)

4. Validation Strategies Validation Source Case Source: Linked MACDP Medical Record Reviews Abstract records for up to 100 cases of specific Dx MACDP Use procedure codes to refine diagnoses

5. Hierarchy of Confidence in Reporting 1.Adult Congenital Heart Disease Specialists & Pediatric Cardiologists 2.Adult Cardiologists 3.Other Providers 4.Billing Data

6. Possible Solutions for Discrepancies in Diagnostic Codes Major codes, used multiple times = primary diagnosis (possible through db management) Algorithms for multiple diagnoses TOF (745.2), COA (747.0) more likely to be clean and accurate diagnosis Perhaps, focus sampling on common diagnoses that have a high likelihood of inconsistencies Grouping all single ventricles?

7. Medical Record Abstraction Performed by trained abstractors Abstract certain diagnoses only? Re-abstraction of 10% with MD review Considerations for number & source of records targeted for review: Resources Ability to access records Concerns regarding accuracy of coding

8. Validation Compare prevalence across data sources & across sites – Prevalence MA & GA, NY adult prevalence With MACDP – more similar to NY, value added to adult population Validation across sites – similar methodologies, both same population compare /contrast Develop a ‘correction factor’ for “out of care”

9. Alive Status With MACDP? c c NO YES NO But Not in Clinic or Medicaid Remove from MACDP Survivors PRESUMED SURVIVORS With MACDP Alive Status Y/N? In Clinic or MCAID? In 5-county Residency ALIVE ? DEAD ? Access NexisLexis YES But Not in Clinic or Medicaid Access NexisLexis c c But Not in Residency With MACDP Better estimate prevalence Develop a ‘correction’ factor With MACDP Better estimate prevalence Develop a ‘correction’ factor