Skip to main content
Please enable JS

CCNC's Sickle Cell Efforts

Sickle Cell System Description

sickle cell system description.png



From review of CCNC Medicaid data, consultation with providers, and consultation with the public health sickle cell program, these issues exist:  Patients may not be seeing their primary care clinician (PCC) regularly, may not be seeing their hematologist, many adult patients are uninsured, and many patients are a good distance from specialty centers in NC all of which leads to poor outcomes for patients and higher cost to the health system.  Emergency departments (EDs) often express difficulty with managing pain medications for sickle cell patients who seem to repeatedly come to the ED.  Those EDs can be frustrated that they cannot get people where they need to go. Due to these concerns, CCNC sees an increased opportunity for care coordination and systems change in the population of children, youth, and adults with sickle cell disease.  

In late 2013, CCNC Pediatrics convened a sickle cell workgroup that included primary care clinicians, hematologists from the major academic centers, public health sickle cell program leadership, CCNC care managers, CCNC Behavioral Health, and the CCNC Call Center.   The identified tasks were distributed to four working committees:  SCD decision support tools for primary care providers, shared care plan, pain guidelines for the emergency department, and linkage of CCNC Care Managers with health Educator Counselors in the care of patients.  The objectives of the group were:

  • To implement best practice in primary care 
  • To enhance co-management between hospitalists, specialists and primary care clinicians 
  • To build systems for transition from pediatric to adult health care 
  • To decrease fragmentation of care 
  • To collaborate with the Chronic Pain Initiative (CPI) to meet the needs of sickle cell patients 
  • To partner with the Child Health Accountable Care Collaborative (CHACC) to facilitate co-management for pediatric patients with sickle cell disease consensus among specialists and PCC's on guidelines in 2014

To partner with Public Health and their programs for sickle cell patients“ Public Health Educator/Counselors have access to provider portal since 2014, and Network Care Managers utilize contact information for regional educator counselors 

Subsequently, and building on this foundation, the state advisory team has developed a statewide system infrastructure to link PCC's, hematologists, emergency departments, CCNC Care Managers, and Public Health Sickle Cell Educator Counselors that continue to collaborate and find new ways to provide education and care coordination, promote use of hydroxyurea for children with sickle cell disease, and guiding information sharing and standardizing processes that lead to improved disease control and decreased ED use and hospitalization rates. The activities of the NC Sickle Cell work group have received national attention from AHRQ and NHLBI. 

Now that the system infrastructure is in place, dissemination is a priority. Next steps include:

  • Technical assistance on implementation of the co-management guidelines targeted to practices that care for patients with sickle cell disease (already identified by network), with a goal for statewide spread
  • Sustain Public Health Educator Counselor connection to the provider portal, which has already facilitated educator/counselor and network care manager collaboration on shared patients.
  • Spread CCNC call center referrals to EDs beyond the Raleigh, Durham, and Mecklenburg areas.
  • Implement transition processes for adolescents with SCD to adult health providers, and track data on PCC and specialty visits on this population.