“A national database for children with medical complexity has been lauded as an opportunity for researchers to improve treatments, families to receive coordinated care and physicians to provide higher quality care,” the authors wrote. “However, the potential for discrimination against children with medical complexity and their families related to making their health information public creates concerns about the potential impact of passing the ACE Kids Act.”
Children with complex medical condistion make up approximately 0.5 percent of all U.S. children but account for almost one-third of all health care spending for children (about $100 billion). Additionally, in children’s hospitals, children with complex medical conditions account for more than half of hospital costs for all admissions and 85 percent of the costs for 30-day unplanned hospital readmissions. The complicated and multifaceted medical needs of these children require services from different specialties and, frequently, from different states. As a result, medical care for these children is often fragmented, the authors said. “Such fragmented care is problematic. Though children with medical complexity depend on comprehensive care, they have to navigate a health care system that struggles to effectively coordinate health care services. This lack of coordination likely contributes to the high rates of adverse events (such as medical errors) that children with medical complexity experience compared to all other groups of children.