Establishing a Hepatitis C Registry for Public Health Interventions

BACKGROUND:  Nationally, Hepatitis C (HCV) surveillance is challenged by large volume of reports, duplicate records, multiple reporting platforms, and incomplete data elements. In October 2014, the University of Chicago Medicine initiated the Hepatitis C Community Alliance to Test and Treat (HepCCATT) program. The program, funded by CDC Cooperative Agreement, PS14-1413, will compile actionable data across public and private sectors, to increase capacity in Chicago for identification, case management, and treatment of HCV.

METHODS: The HCV Registry will compile data from multiple sources including: HCV reportable disease data from the Illinois-National Electronic Disease Surveillance System, Electronic Laboratory Reporting (ELR), provider Electronic Medical Records (EMR), and pharmacies. IDPH is expanding its authority to collect negative HCV test results in Chicago, to establish a screening baseline that will identify the total number of unique persons tested for anti-HCV antibody, measure the rate of infection, accurately identify acute cases and evaluate appropriate testing in targeted populations.  The HepCCATT program also aims to train about 200 primary care providers at 30 community health centers over 4 years to increase screening of individuals at risk for HCV to detect cases and promote disease interventions. Case management will be coordinated through the Chicago Department of Public Health, clinical providers, community health centers and the Community Outreach Intervention Projects. As a baseline needs assessment, Illinois and Chicago HCV surveillance data from 2007-2014 was analyzed for gaps in essential reporting elements. 

RESULTS: In Illinois, an average of 7,627 cases of HCV were reported annually, with 0.2% being acute. Chicago residents represent 35% of cases. During this time, ELR cases increased more than 2-fold, while reducing the local health department manual entry of initial case reports by more than 50%. Even with improvements in ELR, volume still limits the amount of follow-up that can be done.  In Chicago, 70% of reported cases were missing race, 0.8% sex and 29% did not have an address that could be geocoded.  

CONCLUSIONS: : Increasing use of automated reporting sources will facilitate more complete surveillance. The development of a registry that aggregates multiple data sources into a complete record for HCV cases is a challenging informatics endeavor that stretches beyond traditional case reporting and will provide opportunity for meaningful use of data to support clinical outreach and inform public health interventions. The registry may serve as a standard technical platform for the management of multiple infectious diseases.