Community Partnerships and Resources

TAH-t ex patient non profit , Unique Beating hearts.

Mission: As a non-profit organization, Unique Beating Hearts aims to support the total artificial heart community by providing emotional support and creating a sense of community. We believe that time is precious, especially for those dealing with end-stage heart failure, and our goal is to offer an understanding and caring community that may meet the supportive needs of those who are facing this challenging condition.

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Transforming healthcare and outcomes for children with rare diseases is difficult within the current healthcare system. Individual care centers do not have enough children with heart failure to achieve appropriate sample sizes for research or quality improvement activities, necessitating partnerships between multiple facilities.

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

Harnessing the power of a collaborative Learning Health System, ACTION’s 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.

ACTION’s 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.

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