Family SHADE Project Director Karen Marsh and Danio Diary President John Hedberg

The CDS-administered Family Support and Healthcare Alliance Delaware (Family SHADE), in partnership with the Newark, Del.-based entrepreneurs who created health care app Danio Diary, won a federal award last month for innovation in care coordination. Family SHADE proposed adapting Danio Diary, which links care providers, clients and family members, to support children with special health care needs and their families.

One of seven winning entrants in the first phase of the Health Resources and Services Administration’s (HRSA) Care Coordination for Children with Special Health Care Needs Challenge, the team moves on to phase two, in which they have approximately six months to test the app in the community and consider potential customization.

“This is a great opportunity to become more responsive to the community’s needs,” said Karen Marsh, the Family SHADE project director. The organization “connects families and care providers to resources and services. Danio Diary facilitates the connection between families and caregivers themselves.”

Danio Diary, an initiative of Green Line Business Group, provides all the parties involved in supporting a child with special health care needs a central area, called a danio, to post updates about the child’s current condition. Danios are code-protected and HIPAA-compliant, meaning only authorized users can access them.

“It can be a burden to manage a course of treatment for a loved one,” Danio Diary President John Hedberg said. The app “gives families the means to feel more in-control, to save time and to help the care itself.” Any care provider that families allow to access their child’s danio will see all the notes other providers have made, minimizing the danger of paperwork mix-ups.

While phase two of the HRSA challenge includes recruiting community members to test the app and provide feedback, Danio Diary and Family SHADE already have plans for expanding the service. One is to offer trainings to local care providers in the app’s use. Having professionals adopt the app and recommend it to all their clients could quickly increase awareness and usage.

“I think this project can have a significant impact in Delaware and beyond,” Marsh says, “because the service is simple, useful and scalable. You can imagine it taking off and being used all across the country.”

If you are a family member of a child with special health care needs and would like to participate in the app testing, please contact Karen Marsh at kmarsh@udel.edu.