Pediatric to adult care for SCD patients - What could improve the transition?

As a core part of transitioning from pediatric to adult care, Sickle Cell Disease patients face the challenge of not having their data transferred to their adult providers and across providers. When providers do get patient’s care plans, they may be suspicious of those plans - particularly their recommendations on pain medication - if they don’t come directly from a provider within their system. When many patients leave their pediatrician at 18, they face numerous hurdles including identifying which care options work for them, insurance options (potentially including Medicaid), and places of care that specialize in SCD treatment, among other obstacles.

• What data-driven solutions could help improve the transition from pediatric to adult care for SCD patients?