Being a Yardstick of Quality for Sickle Cell Care in the US
A Message from Suzette Oyeku, MD, MPH
Project Director, Working to Improve Sickle Cell Healthcare
Assistant Professor of Pediatrics, Albert Einstein College of Medicine at Yeshiva University
The visionary CEO of Apple, Steve Jobs, said “Be a yardstick of quality. Some people aren’t used to an environment where excellence is expected.” For individuals living with sickle cell disease, the latter part of this quote is all too familiar. Sickle cell disease (SCD) is a group of inherited red blood cell disorders that results in chronic anemia, unpredictable bouts of pain, and other complications related to chronic organ damage. This chronic illness disproportionately affects our nation’s most vulnerable populations. Gaps and geographic variations in the quality of care that is delivered to individuals with SCD have been well described. In 2004, the costs of hospitalizations across the lifespan for SCD were estimated to be close to $500 million.
What would excellence look like in sickle cell care? Integrated partnerships between patients, families, health care providers and the health systems are not the norm in sickle cell care; individuals with this condition and their families often have to deal with care that is fragmented, untimely, poor quality and not patient centered. However, our recent work has begun to demonstrate that we can have networks of hospitals, primary care providers, specialists and community based organizations working together to improve care and ultimately reduce costs for sickle cell disease in US. We are seeing promising collaborations form in two current NICHQ projects focused on sickle cell disease and funded through the Health Resources and Services Administration (HRSA): the Sickle Cell Disease Newborn Screening Program and the Sickle Cell Disease Treatment Demonstration Program. We are excited to partner with the Sickle Cell Disease Association of America and Boston Medical Center to serve as the National Coordinating Centers for both programs. These programs are part of a recent U.S. Department of Health and Human Services (HHS) Sickle Cell Disease Initiative to improve health care and outcomes for SCD.
It was inspiring to see 15 grantee network teams from across the US come together recently as part of the first learning session for the Hemoglobinopathy Learning Collaborative, along with partners from agencies within HHS , including Dr. Dora Hughes, Counselor for Science and Public Health for HHS Secretary Kathleen Sebelius. These networks are comprised of a cross-section of organizations and individuals influencing regional care for individuals with SCD: consumers, hematologists at tertiary care centers, primary care providers, federal qualified health centers, and community based organizations. Using proven quality improvement methods, NICHQ is coaching these teams to plan and test strategies to improve pain management in acute care settings, care coordination between primary care and specialty providers, transitions of care, self-management support, sickle cell trait testing and newborn screening follow-up care in their regional networks.
In recent years, the national dialogue on how to improve quality of care and address rising health care costs has intensified. Policy makers have suggested strategies such as accountable care organizations (ACO) as means to address deficiencies in quality of care and address rising health care costs in our nation. These are local health care organizations and physician groups including hospitals, primary care providers, and specialists who work together and are responsible for the quality and cost of the care delivered to a specific population of patients under their care. The sickle cell disease network model beginning to emerge extends the ACO model by including consumer groups and community based organizations in the leadership structure of these networks. Consumers and community based organizations are essential partners to ensuring coordinated, timely, high quality and patient centered care for this population.
Our grantee network teams in the Hemoglobinopathy Learning Collaborative are working collectively to improve the experience of care for individuals with sickle cell disease where “excellence” is expected. It is exciting to see these teams becoming the “yardsticks of quality” for SCD care, leading the way to innovative strategies for improving the experience and outcomes for persons living with sickle cell disease across the nation. Stay tuned for ideas and stories from our teams in the coming months.