Sisters by Heart supports full transparency in outcomes data among hospitals that treat HLHS
Sisters by Heart’s mission is to support, empower, and educate families, particularly newly diagnosed, with Hypoplastic Left Heart Syndrome (HLHS). HLHS is one of the most complex congenital heart defects requiring at least three open heart surgeries, the first to be performed within days of birth. It is essential that HLHS families have accurate, accessible information and data to empower them in making the best decision for their family, including where to seek treatment for their child. To that end, Sisters by Heart supports full transparency in outcomes data among hospitals that treat HLHS and other complex congenital heart defects (CCHD).
The recent story by CNN, “Secret Deaths: CNN finds high surgical death rate for children at a Florida hospital” [http://www.cnn.com/2015/…/01/health/st-marys-medical-center/], was incredibly distressing. Sisters by Heart believes that medical institutions treating HLHS should be fully transparent in their treatment and outcomes data, including but not limited to: the number of HLHS children treated annually; number of Norwood, Glenn, and Fontan surgeries performed annually; survival rates; complications (number and types); and length of stay. In the absence of transparency, families cannot make informed decisions and children can – and do – die unnecessarily because hospitals with bad outcomes are allowed to continue treating these complex, medically fragile children.
A follow up story by CNN two days ago indicated that the federal agency Centers for Medicaid and Medicare Services (CMS) is investigating St. Mary’s Hospital, as the infants’ treatment in question were all covered by Medicaid. While Sisters by Heart is gratified to hear that CMS is looking closely at St. Mary’s, we also know this is not an isolated incident. There are hospitals operating on HLHS and other complex congenital heart defects that should not be. It is particularly unjust to think that our most vulnerable children are being treated at institutions not equipped to treat them, while infants with private insurance have better options available to them.
It should be noted that there are institutions currently making their data publicly available. [See CNN’s list here: http://www.cnn.com/…/2015/06/health/pediatric-heart-surgery/]. However, it is essential that there is consistency in the types of data released and the way that data is measured in order for the data to be truly meaningful for families. And it is our firm belief that every institution that treats HLHS and CCHD children should make their data publicly available.
While voluntary transparency by some institutions is promising, Sisters by Heart believes it may move too slowly and that too many babies will die unnecessarily in the interim. It is our firm belief that not all hospitals currently treating HLHS infants and those with other complex congenital heart defects should continue to treat these children. We call on all pediatric heart programs to publicly release their outcomes data, and to support the empowerment of parents and families to make decisions based on objective, factual information. Sisters by Heart stands committed to ensuring that data transparency happens quickly – whether through voluntary or regulatory action processes.