After a heartbreaking loss, one entrepreneur built a system to ensure parents can make informed healthcare decisions in times of distress.
In December 2014, Phil Martie and his wife, Jude Alcantara Martie, were expecting twins, when the babies, Bexley and Nicolette, arrived 15 weeks early. They weighed less than one and a half pounds each. Sadly, Nicolette died during surgery, just 27 days old.
Early births for twins are not unusual. According to the March of Dimes, more than half of twins and nearly all triplets and other higher-order multiples are born prematurely (before 37 weeks). Often premature babies spend time in the Neonatal Intensive Care Unit (NICU), where they struggle to make up for the lost time in the womb.
Bexley and Nicolette were no exception; they suffered from respiratory distress, various infections, a heart issue, and had problems with their eyes.
“During our NICU journey, we were powerless because we had no informational tools to help us understand our babies’ medical conditions or their health data,” Martie said. “This left us making decisions that we were ill-equipped to make.”
Martie talked to other parents in the NICU and realized his experience was far from unique, as everyone was starved for “actionable data.” He wanted to help other parents avoid the sense of helplessness that he and his wife had felt. Martie thought access to technology might be the solution.
In his search for tools that would help parents navigate their experience in the NICU, Martie, a VP at Canon at the time, asked his primary neonatologist, Dr. Michel Mikhael for advice. Mikhael told Martie that if he wanted something like that, he would have to build it.
Another Nicolette was born.
“Naming this venture after my daughter ties into the mission: to empower parents of babies hospitalized in NICUs to confidently participate in their children’s medical care through health IT,” said Martie.
Nicolette’s first product is a HIPPA-compliant app called NicoBoard. This specialized tablet and dashboard for NICU parents offers three components: data visualization, research curation and parent engagement.
NicoBoard extracts data from the baby’s electronic health record (EHR) and turns it into visualizations – such as color-coded graphs – that parents can quickly and easily understand.
NicoBoard aggregates educational and research content from reliable sources and then provides parents relevant, actionable research based specifically on their baby’s health issues and status.
NicoBoard gives parents access to such tools as a diary and remote physician face-to-face meetings to keep parents supported.
The company estimates two pilots will be live in early 2017 in the US, followed by a national rollout. Looking ahead, Martie wants to scale the project to oncology, neurology and heart patients in the next few years, with future products based on the NicoBoard platform.
“Prior to my NICU experience, I dreamed of becoming an entrepreneur, but never pulled the trigger because it wasn’t quite right on paper,” Martie said. “After my heart-wrenching experience in the NICU and recognizing the critical need for patient empowerment, I launched the business at a time when it made absolutely no sense on paper whatsoever. It is just something I had to do.”
Ultimately, Martie hopes that Nicolette will help improve outcomes in the NICU.
Other technologies are helping ensure a healthy start. The Heart Rate Observation System (HeRo) for example, used at UC San Diego Health, can predict the risk of life-threatening infections up to 24 hours before they appear in severely premature infants. This innovative monitoring technology uses an algorithm to pick up on slight changes in a baby’s heartbeat, which could be an early sign of a major infection, such as sepsis.
“My wife and I were ill-prepared to competently and confidently participate in their healthcare decisions,” he said. “In retrospect, if we had the right health IT tools at our disposal, we could have made much better decisions for our children, and Nicolette might possibly still be with us today.”