Transforming healthcare and outcomes for children with rare diseases is difficult within the current healthcare system. Discovery and improvement is often limited by small numbers of patients at any one care center.
Individual care centers do not have enough children with heart failure to achieve appropriate sample sizes for research or quality improvement activities, making partnerships between multiple centers necessary.
To achieve our goals, ACTION uses quality improvement science including the Institute for Healthcare Improvement's (IHI) Collaborative Model for Achieving Breakthrough Improvement, and the IHI's Model for Improvement to improve care and redesign the system.
ACTION assists members of our centers to build QI capability and improved outcomes
through the following:
ACTION provides the infrastructure that allows care centers to rapidly
implement best care practices without expensive or time-consuming
infrastructure development. This helps care centers by not requiring care
providers to develop their own QI systems and network to achieve
Quality Improvement Faculty [MD] and the Quality Outcomes Manager [RN]
provide education and coaching about the QI processes as they pertain to
heart failure including:
Systems framework and improvement methods for testing
and implementing improvements—within single care centers
and across all ACTION care centers
Collaboration (across all care centers)
“All teach, all learn” philosophy
Collaborative design sessions: held in person, with all ACTION care centers
Secure, HIPAA-compliant data management infrastructure, including:
Web-based data entry, data storage, reports and data analyses.