Children’s hospitals across the U.S. are backing a national effort by the Pediatric Congenital Heart Association (PCHA) to improve transparency in the reporting of cardiac surgical outcomes.
According to a release, PCHA is developing a website that will provide patients and families open access to data about specific pediatric and congenital heart programs in the United States. It isn’t intended to serve as a comparison tool or definitive ranking; rather, it’s meant to educate laypeople and foster productive discussions between families and the medical community.
The announcement comes on the heels of a year fraught with issues for children’s heart programs, including scandals at John Hopkins All Children’s Hospital and North Carolina Children’s Hospital. An internal review from John Hopkins uncovered 13 unreported cases of patient harm in the pediatric heart surgery unit and rising mortality rates, while the UNC-led program was called out by the New York Times for unexpectedly high death rates.
“This website will go a long way toward ensuring parents have the information they need to choose the best care for their child,” David Kasnic, executive director of the PCHA, said in the release. Kasnic’s daughter was one of 13,000 annual cases in the U.S. that required a life-saving intervention after birth, and he said it’s been his goal since “to improve education, awareness, research and advocacy for all those living with CHD.”
So far, 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 have all signed on to share their outcomes data with the PCHA.
As data continues to roll in from other heart programs, the PCHA said it will continue to update its site and metrics.
“When a family receives a diagnosis, they are often overwhelmed and don’t know what questions to ask,” Kasnic said. “With the launch of this site, we can help families not only identify questions but also provide a centralized consumer-facing tool for getting some of those questions answered. In the end, we hope this information will lead to more informed and thoughtful conversations between families and their providers.”