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.

ACTION, Advanced Cardiac Therapies Improving Outcomes Network will bring together clinicians, researchers, parents, and patients from across a wide variety of medical institutions to develop these critical partnerships. Our goal is to improve critical outcomes for children with heart failure by uniting providers and families, sharing data and outcomes transparently, improving education and standardizing best practices. Our learning network approach will help us to drive improvement in areas that are untouched by clinical trials alone.

Harnessing the power of a collaborative Learning Health System, our collaborative practices methodology aligned with the Model for Improvement (an improvement science method developed and endorsed by the Institute for Healthcare Improvement). Additionally, an adapted Breakthrough Series Model is used for engaging and working with cardiology teams throughout the collaborative, which helps teams learn from one another. We use rapid Plan-Do-Study-Act (PDSA) cycles which allows our care teams to address problems by testing interventions and subsequent modifications in small steps to achieve desired change.

Our motto: steal shamelessly and share seamlessly. Effective networks have an unrelenting commitment to collecting and sharing high quality data. It is necessary to continuously evaluate and prove their value to participants through open communication and transparency of outcomes and results. Transparency between care providers from participating institutions, researchers, parents, and patients is essential to improving care and outcomes for our patients.

For more information or to get involved, please contact ACTION, www.actionlearningnetwork.org or see the brochure here.