Leveraging Data To Improve the Lives Of Georgians With Sickle Cell Disease and Thalassemia
By Angie Snyder and Jane Branscomb, Georgia Health Policy Center
Georgia is home to one of the nation’s largest populations of individuals with sickle cell disease, with more than 7,000 individuals living with the disease in almost every county in Georgia.
While treatments have improved over the years and new ones are emerging from drug company pipelines patients still face serious complications, high rates of hospitalization and early death compared to the general population.
Sickle cell disease is a group of inherited disorders that affect hemoglobin, an oxygen-carrying protein in red blood cells. A gene mutation causes the body to produce sticky, sickle-shaped cells that can block blood vessels and prevent oxygen from reaching tissues and organs. Those living with the disease may experience severe pain, fatigue, organ damage, stroke and death.
Data from public health, hospitals and insurance claims are collected in Georgia to better understand who lives with the disease, how and where they seek care and whether they receive treatment based on best practices. The Georgia Health Policy Center at Georgia State University is the hub for these efforts, serving as Georgia’s Hemoglobin Disorders Data Coordinating Center since its inception in 2011.
Efforts are supported by the Centers for Disease Control and Prevention (CDC). Georgia is one of two states participating in the CDC’s Sickle Cell Data Collection program and one of three that are part of the CDC’s program for Characterizing Complications of Therapeutic Blood Transfusion in Hemoglobinopathies.
The Sickle Cell Data Collection program leverages surveillance data to improve and extend the lives of people with sickle cell disease. The Georgia Health Policy Center recently spearheaded a stakeholder planning process to guide the analysis and dissemination of sickle cell disease surveillance data for the next three years and has started analysis to identify critical gaps in health care access. Such information can help policymakers, public health and health systems determine strategies to improve access to specialists, such as workforce incentives and telemedicine, and target services where need is identified through geographic analysis.
The second CDC-funded effort in Georgia seeks to reduce complications from blood transfusions for patients with sickle cell disease and thalassemia, another hemoglobin disorder. Transfusion can be a life-saving treatment for these patients. Some patients receive this treatment intermittently, but others undergo transfusions on a regular, lifelong basis. But transfusion also carries its own serious risks. The project includes efforts to hone methods to use surveillance data to track and study transfusions and their outcomes and test strategies for sharing patients’ transfusion histories across different hospital transfusion services. It also seeks to increase patient and provider education about how to reduce and manage transfusion complications and increase blood donation by minorities to expand the availability of matched blood for transfusion to these patients.
Research shows that public health efforts, like those of Georgia’s Hemoglobin Disorders Data Coordinating Center, are needed to improve well-being and survival for individuals with sickle cell disease and thalassemia.
Leveraging data to increase scientific knowledge and inform the policies and practices of providers, patients and the public is an effort to see that Georgia’s residents with blood disorders have the opportunity to live as well as medical science can enable them to.
Angie Snyder is a research assistant professor in the Andrew Young School of Policy Studies at Georgia State University and is the director of health policy and financing at the university’s Georgia Health Policy Center. She is the principal investigator for the Hemoglobin Disorders Data Coordinating Center project portfolio.
Jane Branscomb is a senior research associate at the Georgia Health Policy Center, where she leads its systems thinking efforts and directs initiatives of the Hemoglobin Disorders Data Coordinating Center.