Thursday, April 3, 2025
4/3/2025
California Sickle Cell Data Collection Program - The Tracking California team has been responsible for sickle cell disease (SCD) surveillance in the state since 2010, using linked administrative data from state agencies, Medicaid, and clinical partners around the state. The partnership between the Centers for Disease Control and Prevention (CDC), this program in California and other SCDC states have produced peer-reviewed publications, fact sheets, training and informational webinars, conference presentations, policy and legislation support, and contributions to numerous grant proposals in each of the states. In short, a variety of data and information gaps that previously existed have been filled, and the data have informed decision-making that has led to improvements in care. In each of the states, numerous collaborations across state agencies, data stewards, researchers, CBOs, public health partners, and policy makers have been established. Our work in California has supported new grants, state legislation and funding, the siting of new adult sickle cell clinics, and federal reports. However, much remains to be accomplished to inform stakeholders and improve the lives of those with SCD using the program’s surveillance data. We will use our existing SCD surveillance expertise and infrastructure to continue to provide aggregated data to CDC for annual and multi-year reports, multi-state analyses and publication and continue to lead and co-author at least one publication per year with our data. We will provide complete, accurate, actionable information to all stakeholders in California and beyond by maintaining our in-place data use agreements exploring, and incorporating new sources of administrative data and collaborate with the community health worker network to incorporate novel sources of community level data. We also plan to increase the impact of the California SCDC data by engaging our MDT Advisory Group and policy experts to develop a data-driven policy action plan. We will continue and expand our analysis, dissemination, and health education activities with different modalities such as story maps, animated visual abstracts, infographics, and an improved website. We will also continue to collaborate and provide technical assistance to states new to SCD surveillance. Outcomes of this five-year program will be increased standardization of methods among states conducting SCD surveillance, increased number of public health work force professionals who have an understanding of SCD surveillance, increased understanding of the epidemiology (incidence, prevalence, demographics) of those with SCD, increased ability to describe the geographic distribution and social determinants of health related to SCD, increased availability and accessibility of SCD surveillance data and educational materials to support policies and shared decision making about SCD related health care. The increased utilization of SCD surveillance data to guide prevention and care efforts, monitor SCD health outcomes, develop policy, allocate resources, and plan and implement services, especially those concerning healthcare, housing, transportation, education, and employment for people with SCD. Through these activities, we aim to improve health outcomes and length and quality of life, to improve access to quality care, and to reduce health disparities for those living with SCD.
HHS’ Tracking Accountability in Government Grants System (TAGGS) website provides access to detailed descriptions of grants, loans, aggregated direct payments and other types of financial assistance awarded by the HHS Operating Divisions (OPDIVs) and the Office of the Secretary Staff Divisions (STAFFDIVs).