Apple app helps families monitor children’s health worldwide
July 5, 2017
Families across the globe can access a free app developed by the Boston Children's Hospital in the USA to help them organise and monitor their children's health.
The app, called Caremap, enables family caregivers to store vital medical information securely and share it with health professionals as part of their care or in an emergency. Families can also use the app to track health metrics important to them and gain insights to inform their child's care.
The app was developed by Boston Children's Hospital's Innovation & Digital Health Accelerator (IDHA) in collaboration with Duke Health System. Designed for iOS, it was built using the Apple CareKit framework and is available for free in the App Store.
The app will especially benefit children with complex medical needs, who number an estimated 500,000 in the USA. These children make frequent health care visits, tend to see multiple specialists and may require emergency care away from their medical home. Using Caremap, their families can give medical providers critical information such as allergies, medical equipment they rely on and emergency action plans, by showing them the app or sending a PDF snapshot via email.
Day to day, families can track parameters such as exercise, mood, pain and sleep, and add custom metrics of their choice, such as school attendance or temper tantrums. They can view the data in colourful graphs to see trends and patterns, for example to see if the child exercises more if the pain goes down.
"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, 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."
CareKit helps developers design apps to empower people to manage their own care. Caremap uses the Connect module to make it easy to share data and communications with the patient's care team, including doctors, other healthcare professionals, family and other loved ones.
"Effectively managing communications between numerous providers who care for a child with medical complexity can be a full time job for parents," said Caremap clinical advisor David Ming, 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.”
He said the priority with Caremap was not only to organise 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,” he said. “These features make this a particularly exciting opportunity to improve care for children with medical complexity."
Laurie Glader, director of Boston Children's Complex Care Service outpatient programme and co-director of the Cerebral Palsy & Spasticity Center, was also a consultant during Caremap's development. She thinks the app will improve routine care by helping initiate conversations between families and providers and concretely documenting what's been going on with a child.
"Families can track a symptom or something else they're worried about and see patterns over time," she said. "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 centred on the family's goals and priorities."
The development team at Boston Children's and Duke plans to add more functions over time. Their first goal is to connect Caremap to Cerner and Epic, the two largest electronic medical systems, via the FHIR interoperability interface. Eventually, they plan to add secure cloud connectivity; for now, data live only on the user's iOS device.