Prior to 2017, stroke rates for heart failure patients with ventricular assist devices (VAD) was too high. On average, 1 in 3 patients would experience a stroke or neurological event, which in many cases can be fatal or lead to poor outcomes. The clinical community, patients and families, and industry had a common problem to fight together.  

Carolynn Sprague and her son Liam were one of these families. Liam had a stroke while on a VAD in 2013. Spurred by the desire to change this outcome for all patients and families, ACTION was formed in 2017 with 5 centers working together towards this common goal. 

First, we discovered that variation in care and outcomes exists across hospitals and ACTION sites. Specifically, there was a significant amount of variation in stroke rates between institutions (Fig 1).

This is thought to be driven by center volume and experience. This suggested that there was 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. The initial ACTION quality improvement project was focused on decreasing the high risk of stroke in children with heart failure that were treated with VADs. We have now expanded this quality improvement and learning health system methodology across our network and have expanded the scope to include other aspects of acute heart failure.