Podcast: Designing a Family-Centered Care Plan for Children with Special Needs in Austin, TX

Dr. Susan Millea (Left) and Dr. Rahel Berhane (Right)

Children’s Comprehensive Care Clinic was funded by the Community Health Peer Learning Program (CHP) to provide a patient-controlled common technology platform that improves care coordination for families of children with medical and behavioral complexity in Austin, TX. The platform brings together individuals and entities involved of the care of the child, with the family at the center, to develop an integrated health care data ecosystem. Podcast host Peter Eckart joined Rahel Berhane, MD, Medical Director at Children’s Comprehensive Care Clinic and Susan Millea, PhD, Community Systems Analyst at Children’s Optimal Health, during a site visit for their new CIC-START project, which is designing a “shared care plan” that imports goal statements and care instructions from different members of the interdisciplinary care team into the existing patient-controlled application.

This podcast is also available on iTunes, Stitcher, and TuneIn.

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Takeaways from the Interview

In the words of Dr. Rahel Berhane and Dr. Susan Millea…

1. Put families at the center of the care plan

“The story of the child involves all these different players, but at the crux of the matter is the child within the context of their family. So [in the care plan] that family tells a brief description of their child as they see them. For a child with complex medical needs, the physicians, especially the specialists, may be seeing that child as the diagnosis instead of the child in the context of their family, so this is a way to humanize them.”

– Dr. Susan Millea

2. Design care coordination platforms with the end-user in mind.

“I myself am the parent of a special needs child, and I had to navigate the system as a parent and was surprised at how hard it is to be the source of information to all the doctors…The design was intentionally made to look at the problem from the point of view of the person who is seeking care and to make sure all the information is available to all of the people who are likely to be involved in the care.”

– Dr. Rahel Berhane

3. Limit the type of data physicians can view to drive desired outcomes.

“The physician, if they are the home for all this information, they need to have the information at a high enough level that they are informed, but they don’t have to go digging through the weeds. If I am coming in with my child, I’ve got a very limited time for that encounter. So the question became, how do you most efficiently and effectively share the most crucial information about what’s going on with that child?”

– Dr. Susan Millea

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