1. 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

2. 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 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

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

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

5. Develop “best practices” rapidly Pilot test specific solutions (e.g. rural vs urban) Support mature programs with healthcare savings Teleconferences & workshops to share results National certification & registry Partner with community SCDAA Partner with insurers Registry 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, videos role-playing Experience: Clinical shadowing SCD 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