A telemedicine initiative that serves persons with autism and their families is being expanded beyond the borders of Missouri, where it was developed.

This spring, Project ECHO for autism began expanding its geographic reach to Alaska, Arizona and Nevada, and the initiative soon will also reach Kenya, which is setting up its own service. Organizations in India, China, Vietnam and Uruguay also are working to get on board.

Project ECHO had its start in 2003, when Sanjeev Arora, a liver disease specialist at the University of New Mexico, formed it as a telemedicine initiative to expand patient access to treatment for hepatitis C while also educating physicians. Over the years, other ECHO programs covering more than 40 other diseases have been developed.

Since the University of Missouri took the New Mexico program and adapted it to serve persons with autism and their families, 14 other academic medical centers have replicated the model, says Kristin Sohl, director of the Missouri program.

Project ECHO for autism is not a traditional telemedicine program in which a physician or nurse practitioner conducts an online, real-time consultation with a patient or another clinician. Instead, once every two weeks, about two dozen clinicians serving similar types of patients sign into a 90-minute “telementoring” online presentation where a specialist presents a real-life but de-identified patient case study, followed by a question-and-answer period.

Sohl calls the presentation “a community of learners all learning at the same time; it’s kind of like a virtual clinic.”

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Project Echo’s autism program includes an expert team composed of a clinical psychologist, pediatric dietician, social worker, pediatric autism specialist and a parent to oversee training of primary care providers—about 250 to date—to diagnose and manage autism spectrum disorders.

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A parent representing families with autism in the community is the best thing about the program because they bring patient-centered care to the forefront, according to Sohl, who is an administrator and does not provide any direct patient care.

A parent will ask questions that clinicians typically would not think about, such as whether clinicians thought about and understand parental stress levels, or if the clinicians know which parents are grieving following a diagnosis of autism and if any support is being offered to them.

“The parent representative can say, ‘Hey, this mom is in denial,’ ” says Sohl. “The parent helps pediatricians understand the parental challenges.” Physicians who know which families are overwhelmed can ensure a parent is called every couple of weeks just to check in and give new ideas or tools to help cope.

The Missouri program has received support from the Health Resources and Services Administration, state-funded Missouri Telehealth Network, Autism Speaks, Autism Treatment Network, Leda J. Sears Charitable Trust and WellCare Innovation Institute.

More information and help starting local programs is available here.

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