Sickle Cell Data Collection Program Report: Data to Action - Future Steps

Continue California and Georgia’s work

The SCDC program’s first priority is to continue work that has been occurring in California and Georgia. These states had the necessary infrastructure (resources) and institutional knowledge in place to participate in the program as soon as it began. One aspect of this infrastructure is the data sharing agreements that can take years to establish. If the work in California and Georgia is interrupted because of lack of funding or other reasons, these states would be required to restart the data sharing agreement process. Therefore, it is critical to maintain the work begun in California and Georgia and to continue to build a surveillance model that can be applied to other future states.

Expand the number of states participating in SCDC

It is vital that additional states engage in statewide, comprehensive surveillance of those living with SCD, as every state has a unique demographic makeup, distinct healthcare policies, medical and research centers, and access to care. As additional funding becomes available, the SCDC program seeks to create an 18 to 24 month telementoring-based training institute to improve knowledge and to provide access to California’s database infrastructure. The training curriculum would include bimonthly (every two months) information-sharing  sessions, monthly homework and milestones, and bi-annual (twice a year) in-person meetings that will prepare states to begin surveillance upon completion of training. Several states have expressed interest in participating in such a training institute and learning to apply a surveillance model that has proven successful.

Increase SCD knowledge

The SCDC program will continue to expand knowledge across the program’s 5 priority areas by developing targeted, evidence-based educational materials and sharing them with the wide range of SCD stakeholders. SCDC communications activities will continue to be an essential priority, as the purpose of SCD surveillance is to share insights that will ultimately drive improvements in health care and treatment for people living with SCD.