Creating a Collaborative Structure to Improve Management of Sickle Cell Disease toward Improved Health Outcomes
Abstract
Sickle cell disease (SCD) is a chronic metabolic condition caused by abnormal hemoglobin that polymerizes when deoxygenated causing red blood cells to become misshaped and rigid, compromising the flow of oxygen to all organs, placing individuals at higher risk of morbidity, and mortality from infections, Vaso-occlusive pain crisis, acute chest syndrome, and other complications. Access to quality care is critical to maintaining the health of SCD individuals and improving health outcomes. Georgia has the fourth largest SCD population and only two comprehensive sickle cell centers. The Sickle Cell Foundation of Georgia’s (SCFG)’s Access to Care Program (Georgia Community Connections) (GCC) provides care coordination, access to specialty care, and training on evidence-based practices for non-specialty providers.
The community-based organization (CBO) initiative was developed to create a network of organizations across the state. In building GCC, SCFG formed relationships and partnerships in high SCD prevalence and underserved areas of the state and the need for a collaborative network of CBOs emerged. A series of meetings with CBOs determined that capacity building and networking were needed. SCFG advocated for funding to provide mini grants ($10,000 or less). Solicitation and selection processes were established, and seven organizations were funded. Organizations agreed to participate in capacity building assessment, activities, quarterly meetings, and to provide services in their local communities. Subject matter experts and peer-to-peer approaches will be used to build capacity
It is anticipated that this network will increase local access to supportive services, patient education, and use of appropriate medical services. The project will help enhance sustainability and capacity of the funded organizations to provide services.
A collaborative network will enhance access to services needed by individuals with SCD to improve disease management and health outcomes; reduce duplication to improve efficient use of resources; and improve access by providing information on gaps and needs.
Keywords
collaboration, partnerships, sickle cell disease, access
Creating a Collaborative Structure to Improve Management of Sickle Cell Disease toward Improved Health Outcomes
Sickle cell disease (SCD) is a chronic metabolic condition caused by abnormal hemoglobin that polymerizes when deoxygenated causing red blood cells to become misshaped and rigid, compromising the flow of oxygen to all organs, placing individuals at higher risk of morbidity, and mortality from infections, Vaso-occlusive pain crisis, acute chest syndrome, and other complications. Access to quality care is critical to maintaining the health of SCD individuals and improving health outcomes. Georgia has the fourth largest SCD population and only two comprehensive sickle cell centers. The Sickle Cell Foundation of Georgia’s (SCFG)’s Access to Care Program (Georgia Community Connections) (GCC) provides care coordination, access to specialty care, and training on evidence-based practices for non-specialty providers.
The community-based organization (CBO) initiative was developed to create a network of organizations across the state. In building GCC, SCFG formed relationships and partnerships in high SCD prevalence and underserved areas of the state and the need for a collaborative network of CBOs emerged. A series of meetings with CBOs determined that capacity building and networking were needed. SCFG advocated for funding to provide mini grants ($10,000 or less). Solicitation and selection processes were established, and seven organizations were funded. Organizations agreed to participate in capacity building assessment, activities, quarterly meetings, and to provide services in their local communities. Subject matter experts and peer-to-peer approaches will be used to build capacity
It is anticipated that this network will increase local access to supportive services, patient education, and use of appropriate medical services. The project will help enhance sustainability and capacity of the funded organizations to provide services.
A collaborative network will enhance access to services needed by individuals with SCD to improve disease management and health outcomes; reduce duplication to improve efficient use of resources; and improve access by providing information on gaps and needs.
