Sickle cell disease is complex and expensive, with major barriers to healthcare delivery Rare...
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Transcript of Sickle cell disease is complex and expensive, with major barriers to healthcare delivery Rare...
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
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