The Children’s Hospital Colorado and others are partnering with the Pediatric Congenital Heart Association (PCHA) in an effort to make information on congenital heart disease (CHD) more accessible and understandable to families impacted. CHD is the most common birth defect in the United States, occurring in approximately one in every 100 babies. However, information about the quality of care available, along with short- and long-term outcomes for patients, is limited and oftentimes difficult to interpret. This effort has the goal of improving information sharing, overall outcomes and quality, and patient and family experience.
PCHA is developing a website that will provide patients and families with program-specific pediatric and congenital cardiology data combined with improved explanation and context for families to aid interpreting the data. The Heart Institute at Children’s Hospital Colorado, the Herma Heart Institute at Children’s Hospital of Wisconsin and The University of Michigan Congenital Heart Center at C.S. Mott Children’s Hospital in Ann Arbor were among the first hospitals to share their outcomes data with the PCHA for testing and development of the website. The PCHA’s new website is not intended to rank or compare hospitals but instead, it will provide data to support an educated conversation between families and the care teams. The PCHA will continue to add metrics and subsequent updates to the site.