Sickle cell disease is complex and expensive, with major barriers to healthcare delivery

• Rare disease, Minority health disparities, • Incomplete control of chronic and acute pain• Prevention and therapy are complex, with many specialist

doctors• Frequent need to be checked for emergencies• Multiple transitions between inpatient and outpatient services• Cultural and ethnic differences between families and much of

the medical care system

• Neighbor• Trust • Relevant • Experience

Social and cultural alignment of CHWs

with their communities is a major aspect of

effective intervention

Community health workers (CHW) and Patient Navigators (PN) • effective in other chronic conditions: mother-baby, asthma, cancer• especially for underserved communities

Is it time to make community-based support a national priority for sickle cell care? “work in progress” from Lewis Hsu and the Interest Group for Community Health Workers for SCD

CHWs/PNs roles can include navigating health systems and resources.

CHWs/PNs service roles include social support and lay health counseling.

Develop “best practices” rapidlyPilot test specific solutions (e.g. rural vs urban)

Support mature programs with healthcare savingsTeleconferences & workshops to share results

National certification & registryPartner with community SCDAAPartner with insurersRegistry to allow referrals & to show gaps

Impact of holistic approach• Adopt/disseminate innovation• Community awareness• Speed of clinical research• Trainees attitudes• Philanthropy

Match training to goals? Didactic:

visual aids, videosrole-playing

Experience: Clinical shadowingSCD in family

• Hospital-based care coordinator• Patient Navigator in med center• Community-based health ed• Parent-to-parent / Grandparent• Faith-based groups / Americorps• Immigrant ethnic group• Alternative / complementary med• Communication with clinical teams• Transportation• Social media

What program elements?• Medication usage,

– HbF, iron overload, PenVK

• ED usage, hospital 30-day readmit, costs• TCD screening & preventive care• Adolescent transition to adult• School and job achievement• Quality of life, patient activation• Exercise & nutrition, planned pregnancy• Social isolation

What outcomes?

Possible research questions