The Advanced Cardiac Therapies Improving Outcomes Network (ACTION) consists of clinicians, researchers, parents, and patients from across a wide variety of medical institutions. 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. Our current focus is on improving outcomes for pediatric ventricular assist device (VAD) patients. This VAD learning network approach allows us to make improvements faster across this collaborative system.
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.
To learn more, review our "About ACTION" handout.
In the current era, approximately 30% of all children will suffer a stroke when supported on a ventricular assist device. In many cases this may be fatal or lead to a poor neurological outcome. However, there is a significant amount of variation in stroke rates between institutions (fig 1). This is thought to be driven by center volume and experience. This suggests that there is an opportunity to identify and implement best practices from those centers that have lower stroke rates, in order to improve the outcomes for children treated at all centers. Traditional models of clinical trials have well-known limitations in dealing with rare diseases such as heart failure in children. While trials can address specific questions and are instrumental in validating critical treatments, they leave many questions unanswered.
Therefore, the initial ACTION quality improvement project will be focused on decreasing the high risk of stroke in children with heart failure that are being treated with ventricular assist devices. While this will be the first project, we anticipate extending the scope of work to include other aspects of acute heart failure. Over time, we also hope to become a platform for device trials and assist in receiving regulatory approval for the devices being implanted in children.
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.
Participation is open to all pediatric heart failure centers, and we expect participation