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Data4SCD

Promoting Knowledge Around SCD-Friendly Emergency Departments

The lack of specialists in Sickle Cell Disease and poor access to treatment resources creates challenges for patients who may not have people to advocate for them or individualized care plans that they can easily present to ED physicians. Many patients have to drive to select emergency departments for specialized care, which can often be daunting if that emergency department is far away. 

While long-term goals, like increasing the number of infusion centers and developing day hospitals, are admirable, more immediate solutions may also be possible. One such solution would be to provide better data on the centers that already provide specialized SCD care and more widely disseminate that data to patients hoping to access those centers. Solutions can range from a national, frequently updated directory of these centers, to a rating system where patients share their experience with emergency departments and other centers to encourage better care.

What datasets could help patients find and access SCD-friendly medical centers and emergency departments?

 

Paul Kuhne

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