A Common Framework to Share Data and Address Hepatitis C

BACKGROUND:   New treatments for hepatitis C (HCV) are fundamentally changing the clinical and public health responses to HCV. Older treatments had lower cure rates (60%-70%) and side effects. People at highest risk of spreading the HCV infection were least likely to qualify for treatments that could reduce the virus in their body. Today, HCV treatment can be offered with fewer side effects and higher cure rates (>90%). Nearly 60,000 Coloradoans are currently living with the infection. Treatment is costly. Health plans are wrestling with complex ethical questions and weighing public health needs to maximize appropriate access to new treatments. To better inform decision makers, health leaders convened a working group of data stewards to describe HCV in Colorado. 

METHODS: Data stewards were recruited from public health, Medicaid, behavioral health, prisons, and private business. An HCV continuum of care provided a framework to describe the burden of HCV in Colorado and specific communities, screening practices for HCV, and clinical responses and outcomes. The continuum categories included primary prevention, early infection/diagnosis, entry into care, ongoing services for people with HCV, and cure. The stewards defined specific questions to address each continuum category. National, state, and local data were combined to rapidly and comprehensively address these questions. The databases included: NHANES, CDC Wonder, electronic laboratory reports, electronic health records, state birth and death records, state estimates of injecting drug use, data on inmates in state corrections, and payor data.

RESULTS:   Colorado completed an epidemiologic profile of HCV that describes the burden of disease. The National Health and Nutrition Examination Survey provided initial estimates of HCV in Colorado, but this data did not include people who are homeless, incarcerated, or military. Estimates were refined using electronic laboratory reports, electronic health record data, state estimates for injection drug use, state estimates for people living in corrections, death certificate and cancer registry data. All Payer Claims data was compared to laboratory reported data to evaluate HCV screening. Colorado continues to use the continuum of care to describe HCV in Colorado. It is informing public health changes to reporting regulations, a re-evaluation of insurance benefits, and local  planning to address the HCV epidemic.

CONCLUSIONS:   The continuum of care provided a useful framework from which to combine complementary data sources to describe HCV in Colorado. It equips policy makers with information needed to make valuable decisions about where the unmet gaps exist and how to meet them.