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Updated: Jan 8, 2026

A Precision Medicine Tool for Measurement and Monitoring of Hemoglobin S in Sickle Cell Disease Patients Receiving Transfusion Therapy
Improving Healthcare Efficiency and Patient Outcomes Through Proactive Insight to Action: A Sickle Cell Disease Case
David Rubin1,2, Elizabeth Brooks1,2, Rachel Biblow1,3
1Children's Hospital of Philadelphia, Philadelphia, PA, USA.
Abstract:
As healthcare systems grapple with simultaneous challenges of patient engagement, access for services, and growing clinician burnout, we share an approach to quality improvement focused on equipping integrated care teams with methods for proactive insight and action to manage patients. This approach offers a way to deliver outcomes that value-based care arrangements look to achieve, and which can alleviate clinician burnout and improve satisfaction across care teams. We illustrate our experience with a program managing patients with sickle cell disease in Southeast Pennsylvania that has delivered improved outcomes, including improvements around the provision of important medication therapies and completion of annual screening tests, for a population that historically faces many health inequities. These tools and workflows are still widely in use today. Improving the care of a patient longitudinally requires an approach across the continuum of care and inevitably requires a team-based model with a multidisciplinary emphasis to better engage patients outside of office visits and relieve burden on frontline clinicians.
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