Parents of the 500,000 children with complex medical needs are constantly juggling doctors’ appointments and prescriptions. A new health application, developed by Boston Children's Hospital's Innovation & Digital Health Accelerator (IDHA) with Duke Health System, aims at providing families with a single platform to securely share and track health data for their child’s care.

The Caremap app was developed as a personal healthcare assistant to parent of children with complex medical needs. The app allows parents to securely manage multiple healthcare visits, track progress and securely share and show critical information to medical professionals through the app or in email form.

"We wanted to provide a trusted and much-needed resource that would harness the patient voice and family perspective," said Caremap clinical lead Michael Docktor, MD, a gastroenterologist and Clinical Director of Innovation at Boston Children's IDHA. "The ability to track custom parameters provides an important window into patients' lives that is not captured in the electronic health record, but is important to families."

The day-to-day health factors like exercise, mood, pain and sleep are included in the app for daily updates on the child’s health. The app is also customizable based on the needs of the patient with features including school attendance and temper tantrums. The factors are projected as graphs to keep parents and caregivers engaged in the child’s care as well as to more easily track progress.

"Families can track a symptom or something else they're worried about and see patterns over time," she says. "The parent can say 'That's actually better since such-and-such has been under control,' or a provider can point out, 'Look how much more frequently that's happening now.' If we start a new medication, they can track how their child responds. But the most important part of the app is that everything is centered on the family's goals and priorities."

Researchers hope the app will improve the communication between families and providers by giving parents a platform to document their child’s care.

"Effectively managing communication between numerous providers who care for a child with medical complexity can be a full time job for parents," said Caremap clinical advisor David Y. Ming, MD, a hospitalist at Duke University Medical Center and director of Duke Children's Complex Care Service. "So much effort is required to keep track of the details that often the 'bigger picture' perspective can get overlooked. The priority with Caremap is not only to organize relevant clinical details, but also to highlight the overall care goals. This will allow providers to know the child's medical problems and understand directly from parents what matters most for their child and what makes their child unique. These features make this a particularly exciting opportunity to improve care for children with medical complexity."