For families with a child who has complex medical needs, keeping on top of all the information associated with their care and day-to-day functioning can be tough. Seeing that pain point, Boston Children’s Hospital and Duke Health System came together to develop an Apple CareKit-based iOS app called Caremap, designed to help families securely track their children’s health and share that data with members of their ongoing care team. Additionally, the app can serve as a detailed repository of critical information such as allergies, devices in use or emergency action plans.
“For children with complex medical conditions, there are a lot of things going on, from multiple health problems and providers to specific information about what type of device they are using, and a lot of those are not easily captured in an electronic health record,” Dr. Michael Docktor, a gastroenterologist at Boston Children’s who served as the clinical lead for Caremap, told MobiHealthNews.
Around half a million children in the United States fall into the category of those with complex medical needs, which can require frequent interactions with multiple specialists and clinics that don’t necessarily share information with one another, Docktor said.
“Another thing to think about is the fact that even if they have a medical home at a pediatric hospital with all of their information, they could be on vacation and end up in an adult emergency room, which will not have access to their electronic health record anyway, and can't immediately see something like what size tracheostomy tube or feeding tube they are using. They could show them the app in that situation,” he said.
The app allows families to track across ten daily parameters, including sleep, pain levels, mood and bathroom habits, but users can also add custom metrics that are relevant to their specific health conditions or goals. For example, some may want to track and quantify things like school attendance or temper tantrums. The data is displayed in colorful graphs to help families see trends or patterns – such as how pain levels rise or fall with exercise or certain foods. While the data doesn’t sync to another platform on the clinician’s end, Caremap does give users a sharable, easy-to read PDF version they can email.
“If they bring the app into their clinician or an ER doctor they don’t know, they’ll have information on that child’s high-level goal, or a seizure action plan,” said Docktor. “It generates data to build towards a secure PHR, but we aren’t quite there yet.”
What Docktor means by that is this is very much the first version of Caremap, and there are certain capabilities it just doesn’t have yet.
“Right now, it’s a tool for families, first and foremost. We want it to eventually get to the point where we can take this data and push it into the EMR, but we’ll have to build more iterations of Caremap before we get there,” Docktor said.
The idea for Caremap was born a little over a year ago out of the shared vision for such a digital health tool by Docktor and Apple ResearchKit pioneer Dr. Ricky Bloomfield. Bloomfield, who now works for Apple’s health team, was on the forefront of implementing ResearchKit and HealthKit and was working as Duke’s Director of Mobile Strategy. So for the last year, engineers, clinicians and designers at Boston Children’s Innovation & Digital Health Accelerator worked with Duke to develop Caremap.
“In parallel universes, we were all excited about Apple and the various platforms they were creating, and we saw how CareKit could be such a great thing to use to create a meaningful tool in pediatrics,” Docktor said.
The app comes just a few days after Apple's update of CareKit, which features Apple's Cloud Bridge API to make data-sharing between CareKit patient apps and care teams easier. There's also a new tab called Care Contents that allows developers to combine activities for Care Card and Symptom Tracker, and all four of the platform's modules have been improved for enhanced visibility, better connectivity and more intuitive use. To help visualize completion of care activities, CareKit headers now show a daily ring view with customizable glyphs and 28 icons that displayed on the smartphone app as well as the Watch. Apple also released a prototyping tool to allow anyone to play around with new features.
Dr. Laurie Glader, director of Boston Children’s Complex Care Service Outpatient Program and co-director of the Cerebral Palsy and Spasticity Center, worked as a consultant during the development of Caremap. She said one of the main benefits of the app is the way the concrete documentation of a child’s daily function could help initiate conversations between families and clinicians.
“Families can track a symptom or something else they’re worried about and see patterns over time,” Glader said in a statement. “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.”
Initially, they planned for an app that could integrate with either hospital system’s respective EHRs (Duke has Epic, Boston Children’s has Cerner) and align with Fast Healthcare Interoperability Resources (FHIR) guidelines. While they had to scale back on that goal, Docktor said the plan is to keep improving Caremap, first by bringing in the two major EHRs and adding secure cloud connectivity.
“Full integration with every information system and device isn’t where we are focusing at the moment,” he said. “This is really very much an experiment in several ways. We’re not trying to boil the ocean here. We’ll start off small, set realistic expectations of what families can get from the app as we figure out how to improve it along the way.”
