Children’s National Health System, a pediatric academic health system, is working with patient engagement vendor GetWellNetwork to develop a mobile app for families facing a new diagnosis of autism spectrum disorder for a loved one.
“Our families have told us that the days and weeks after a new diagnosis can be one of the most challenging and overwhelming times they’ve ever experienced,” says Kathleen Chavanu Gorman, executive vice president of patient care services and chief operating officer at the hospital.
GetWellNetwork, which develops a wide range of healthcare mobile apps, wanted to create an app for the autism community, learned about Children’s National’s expertise and made the first contact with the hospital.
The program’s goal is to create a process for families to navigate the complexities of learning about autism, starting with the questions of what to do now, how the family will manage and how to share the news and educate family members, caregivers, teachers and others with a role in caring for the child.
“Well-informed parents and caregivers are their child’s best advocates,” says Lauren Kenworthy, director of the Center for Autism Spectrum Disorders at Children’s National.
When the diagnosis is confirmed, patients historically have been given a pile of paper forms to fill out to find available resources. The whole process can be overwhelming, and a lot of the information doesn’t make sense, Gorman says.
At Children’s National, families will be given an app that provides clear, concise and timely information to help families target their top three priorities as they start the journey of learning to live with autism. The app also has a daily therapy-tracking tool.
Building of the app has begun with the hope of pilot testing with families this fall, and expanding to international markets in 2019, Gorman says. Families will play a role in building the content of the app. During the development process, Children’s National and the vendor will have to work through privacy and security issues to ensure compliance with HIPAA rules, she adds.
Over time as the app is further developed, teachers with students who are on the autism spectrum will get the app, which will be the start of creating an interconnected network of family, community resources, teachers and physicians.
When the app, called “The GetWell Go Pathways” tool, is ready, it may be prescribed as needed by autism specialists during routine appointments at Children’s National. Providers will be able to tailor content for each family meet to each child’s unique challenges.
Content on the app will include:
- Digital milestone checklists to assess language, social and motor development and facilitate conversation between clinicians and parents.
- Primers that explain how to prepare for formal examinations.
- Parenting strategies to address common challenges.
- Tips on now to navigate school programs and services.
- Assistance in connecting parents to a network of families for social and emotional support, as well as legal and financial planning tools to prepare for the future.
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