Nemours Children’s readies new specialty app for newborns with a rare heart defect

Nemours Children's Hospital-Orlando
After a plea from one of Nemours' top surgeons, developers decided to push up the launch date of a new cardiac app. (Image: Nemours Children's Health System)

When officials at Nemours Children’s Health System unveiled a new asthma app earlier this year, it immediately caught the eye of one of the system’s top cardiac surgeons, who saw an opportunity to use the digital platform for a specific subset of high-risk patients.

The day after the IT team demonstrated the new app for employees, Christian Pizarro, M.D., the division chief of pediatric cardiothoracic surgery at Nemours Alfred I. duPont Hospital for Children, made a plea to developers to speed up a planned launch of a similar app geared towards patients with a rare but high-risk heart condition in which infants are born with a single ventricle in their heart.

The condition requires several surgeries, including one immediately after the child is born, and the second months later. Studies show the mortality rate between those two initial surgeries can reach 20%. Pizarro told the digital team about one specific case in which a newborn patient, who was in the hospital for seven months, died three days after being discharged home.

“He said to us, ‘If we had these tools, that baby would still be alive,” PJ Gorenc, operating officer at the Nemours Center for Health Delivery Innovation told FierceHealthcare. “You can’t hear a story like that and not feel like, wow, we have to take this on.”

RELATED: With the launch of a new asthma app, Nemours looks to bring all its digital tools onto a single platform by 2019

Rather than wait until a planned diabetes app was completed, the IT team decided to push up the launch of the cardiac offering, integrating new functionality into the basic infrastructure used to create the asthma app. The new app is tentatively scheduled to be released in June.

The apps are part of a broader effort by the Delaware-based system to consolidate its digital tools onto a single platform. Like the asthma app, the cardiac app layers real-time data on top of the medical record, along with videos from parents, allowing clinicians to observe the patient at home and identify any potential complications. Nemours is also leveraging its telehealth platform to provide on-demand access to specialists.

Those are critical features for high-risk patients that require constant monitoring. It also provides an added layer of support for families accustomed to 24/7 care while they are in the hospital. Other pediatric hospitals around the country, including Children’s Mercy Hospital in Kansas City, have launched similar efforts, using digital tools to address the rare congenital heart defect.  

“Research shows that if you can monitor certain things about the baby when they leave the hospital—like oxygen saturation, heart rate, and daily weight changes—that mortality rate drops almost to zero,” Gorenc says.

But Nemours is also waiting for the medical device industry to catch up. Gorenc says there still isn’t an FDA-approved connected pulse oximeter that can automatically feed data into the platform. For the time being, parents enter that information into the app manually.

“What we’re hoping is the industry evolves to where we can get a connected device to communicate those readings passively,” he says.