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Updated: May 20, 2025

A Precision Medicine Tool for Measurement and Monitoring of Hemoglobin S in Sickle Cell Disease Patients Receiving Transfusion Therapy
A health equity ECHO for clinicians of individuals with SCD
Lisa M Shook1,2, Lori E Crosby1,3, Christina Bennett Farrell2
1Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH 45229, United States.
Abstract:
SCD is the most common genetic disorder in the United States, affecting nearly 100 000 Americans, with the majority of affected individuals identifying as Black. Studies have shown that both children and adults with SCD face stigmatization resulting in low-quality care stemming from institutional racism and implicit bias by clinicians. Clinician biases often result from a lack of awareness of their own racial identity, failure to develop an anti-racist or social justice lens, and absence of skills to mitigate racist practices and policies. The Sickle Treatment and Outcomes Research in the Midwest (STORM) multi-state regional learning network developed a health equity training curriculum that was delivered as a continuing education learning series using the Project ECHO® virtual telementoring framework supplemented with an online learning management system. The curriculum addressed foundations of race, racism, and whiteness along with social justice strategies for the individual and institutional level and was piloted with 2 clinician cohorts to assess its feasibility, acceptability, and the potential impact on clinician self-efficacy. Feasibility and acceptability data, including qualitative feedback, suggest that this is a promising method for multidisciplinary clinicians and trainees for raising self-awareness about racism and bias, providing a safe community for self-reflection, and building skills to address inequities within healthcare settings.
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