CNN report on pediatric heart surgery spurs conference on transparency

Dr. Jeffrey Jacobs, center, has pushed for pediatric heart surgery programs to be open about their death rates.

Story highlights

  • Of 107 pediatric heart surgery centers in the U.S., only 32 make this data public
  • CNN reported on lack of transparency spurring new conference on transparency this week

(CNN)Amy and Brian Basken had been home from the hospital for just 45 minutes with their newborn son, Nicholas, when they received an urgent phone call. It was a doctor telling them to return right away because tests showed Nicholas had a potentially lethal heart defect.

The Baskens would have loved the opportunity to compare hospitals in their area and find out if the hospital where he was born was really the best place to go. Perhaps another one had more experience or better success rates with babies with heart defects.
But they had no way of doing that, because most hospitals aren't fully transparent with their data -- they don't reveal how many children they've operated on and how many have lived and died.
    When the Baskens arrived back at the hospital where Nicholas was born, Amy said doctors told them they would take care of him. The anxious new parents said they waited at the hospital for more than eight hours only to be told Nicholas wouldn't be having surgery there. He would have to be airlifted to another hospital 80 miles away.
    The surgery to widen Nicholas' narrow aorta -- the major vessel that carries blood from the heart to the rest of the body -- was a success, but Amy said she and her husband felt left out of the decision-making about where to take Nicholas because hospitals so often keep their data secret.
    "It's extraordinarily frustrating and disappointing that more hospitals are not forthcoming," she said. "Parents deserve the truth."
    Inspired by her experience and those of other families, Basken this week organized the first national conference on transparency in pediatric heart surgery.
    She said the catalyst for holding the conference was CNN's reporting in June on the lack of transparency at pediatric heart surgery programs. For the first time, CNN assembled a list of which centers are transparent and which are not.
    "CNN's coverage really promoted the discussion of this issue," said Basken, director of programs for the Pediatric Congenital Heart Association.
    Basken said more hospitals are transparent now than they were 10 years ago when Nicholas was born, but complete transparency is still the exception rather than the rule.
    Some 107 pediatric heart surgery centers in the U.S. report their mortality data to the Society of Thoracic Surgeons. Out of those, only 32 allow the Society of Thoracic Surgeons to make this data public.
    A number of other hospitals report some data on their websites, but it's typically incomplete, and unlike the STS data, it's not subject to random audit.
    Dr. Jeffrey Jacobs, the pediatric heart surgeon who's spearheaded the national effort to get more programs to be transparent, said he thinks insurance reimbursement should be tied to transparency -- if a hospital won't reveal its outcomes, they shouldn't be paid.
    Jacobs' program, the Johns Hopkins All Children's Heart Institute in St. Petersburg, Florida, allows the STS to publicly report its mortality data.
    "Hospitals like ours report our data because we're proud of our data, and we believe in the right of patients and families to know these outcomes," said Jacobs, chair of the STS National Database Workforce, who attended this week's transparency conference in Chicago.
    Hospital executives have offered up various arguments for why they don't reveal their outcomes. In 2013, Michael Karpf, executive vice president for health affairs at the University of Kentucky's health care system, said "data is a complex issue" and that most people "have a hard time understanding data."
    Earlier this year, Davide Carbone, then the chief executive officer of St. Mary's Medical Center in Florida, said in a statement to CNN that providing raw mortality data "does not give proper context for the complexity and severity of each case, which could potentially lead to providing misleading information to consumers."
    A few months later, St. Mary's reported a risk-adjusted mortality rate of 4.7% for January 2011 through December 2014, which they said was within average range for hospitals nationally. But the hospital didn't reveal the data -- the number of surgeries and number of deaths -- they used to establish their rate.
      This week, the hospital closed their pediatric heart surgery program and Carbone resigned.
      Amy Basken said she doesn't buy any of the arguments against transparency. "It's the right of parents to have this information, and it's the responsibility of hospitals to provide it," she said.