Surveillance & Data Collection
Detailed information about the population of persons living with SCD in the state, their health and health outcomes, their access to quality care and their healthcare utilization, and their challenges to a good health and quality of life are vital to understanding the problems we seek to address and evaluating change. California has been at the forefront of state-based efforts to conduct public health surveillance for sickle cell disease since 2010, with implementation of state-wide, multi data source, longitudinal data collection that includes all with this disease. The NCSCC expands this work, providing funding for increased data collection and staffing to support analyses and dissemination of the data.
The Tracking California program houses the California Sickle Cell Data Collection (SCDC) program as part of their partnership between the Public Health Institute and the California Department of Public Health. SCDC gathers Medicaid claims data, newborn screening case identification, clinical case identification, vital records death files, and state-wide hospital discharge, emergency department, and ambulatory surgery data sets. Tracking California’s data linkage expertise facilitates the development of machine-learning connections among and across these data sources, creating a longitudinal look at key health issues and outcomes for those with SCD, over 15 years of data.
Moving forward, the program’s expansion goals include adding Kaiser healthcare systems’ data to the clinical case reports, receiving Medicare claims data for dual eligible and over-65 recipients with SCD, adding new patient-focused resources developed with these linked data, and increasing the number of analyses and publications per year.