Quality Improvement

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.


Our Approach

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
    these capabilities.


  • 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
    and parents/patients

Data management

  • Secure, HIPAA-compliant data management infrastructure, including:

    • Web-based data entry, data storage, reports and data analyses.