Family caregivers — as well as older children and adolescents — now have a powerful health data tracker. With a free iPhone app called Caremap, they can securely store and organize vital medical information, share it with health professionals, track health metrics important to them and gain insights to inform care.
For Michelle Domey, that means keeping close tabs on her son Carson’s Crohn’s disease. It means understanding early warning signs and what triggers a flare, like not getting enough sleep. “When he has a flare, the app is something we could take into an appointment,” she says. “We have historical data that can show us what may have triggered it.”
Available for free in the iTunes App Store, Caremap was developed by Boston Children’s Hospital’s Innovation & Digital Health Accelerator (IDHA) in collaboration with Duke Health System. It was built using Apple’s open source CareKit framework.
Day to day, families can monitor pre-set parameters like exercise, mood, pain and sleep. Or they can set custom metrics of their choice, viewing the data graphically to see trends get insights. The trends, too, can be readily shared with the child’s care team.
“Families can track a symptom or something else they’re worried about and see patterns over time,” says Laurie Glader, MD, director of Boston Children’s Complex Care Service Outpatient Program and co-director of the Cerebral Palsy and Spasticity Center, who was a consultant during Caremap’s development. “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, parents can track how their child responds.”
Carson and his mother track how many days Carson misses from school. They also created a new pain metric just for his mouth. (Crohn’s is often associated with oral inflammation.)
“The mouth is a good indication that he’s going to have a flare in his stomach,” says Domey, one of Caremap’s original testers. “Once we could get some data, we could say, ‘we noticed that when pain starts in his mouth, it’s in his gut three to four days later.’”
Improving care with family-controlled data
Though anyone with an iOS device can use Caremap, it’s designed especially for children with complex medical needs, who number an estimated 500,000 in the U.S. These children make frequent health care visits, tend to see multiple specialists, and may require emergency care away from their medical home. The app makes it easy for families to give medical providers critical information such as allergies, medical equipment they rely on and emergency action plans. They can simply show providers the app or email a PDF snapshot. (Click screenshots to enlarge)
For parents of a child with medical complexity, effectively managing communication between numerous providers can become a full-time job, notes Caremap clinical advisor David 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.”
Domey thinks the app will help her keep Carson’s various specialists (gastroenterology, oral surgery, rheumatology, otolaryngology) on the same page and help them collaborate. And while she doesn’t want to put it to the test, she thinks it will be helpful in emergencies. “When you go to the ER, you’re overwhelmed and it’s hard to remember information,” she says. “But on the app, it’s readily accessible.”
The patient voice
Most important to Caremap’s creators is that everything in the app is centered on what matters most for the child and family.
“The ability to track custom parameters provides an important window into patients’ lives that is not captured in the electronic health record,” says Caremap clinical lead Michael Docktor, MD, Carson’s gastroenterologist and clinical director of innovation at Boston Children’s IDHA. “We wanted to harness the patient voice and family perspective.”
In fact, while Caremap was designed with parents in mind, Carson has downloaded it to his own iPhone and is entering his own data. His mother thinks this is a great way to help him transition his care as he gets older.
“When I put the app in Carson’s hands, he was empowered to communicate with his care team,” she says. “No 13-year-old wants their mother asking ‘how do you feel?’ every day. He was able to adjust some things to what he wanted.”
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.
Toward integrating care
The Caremap mobile app is only a first, digital step toward Boston Children’s larger goal of improving integration of care for children with complex healthcare needs, says Docktor. Richard C. Antonelli, MD, MS, medical director of integrated care at the hospital and parent Cristin Lind have pioneered the thought leadership in this domain, developing a Care Coordination curriculum to support providers and a tool for families called Care Mapping.
“We look forward to learning more and studying the needs of patients, families and complex care providers to help with the important work of provider-family partnerships and care integration,” says Docktor.