Closing the Epilepsy Care Gap

In rural and underserved communities, people with epilepsy don’t always have access to the care they need—especially to specialists, such as epileptologists, neurologists, or occupational therapists. According to the World Health Organization, 80% of people with epilepsy live in low- and middle-income countries, and 75% of them don’t get the treatment they need. Instead, many rely on their primary care providers to manage their condition. 

“One of the big problems is that there are a lot of primary care doctors who may not be up-to-date with the latest in epilepsy treatment,” says Michael Privitera, M.D., director of the Epilepsy Center at the University of Cincinnati Gardner Neuroscience Institute. “People with treatment-resistant epilepsy should be referred to an epilepsy center for advanced or specialized treatments within three to five years of their diagnosis. But in certain communities, that’s not always an option.” 

To help bridge this gap, the American Medical Association (AMA) recently announced its decision to encourage greater use of telemedicine to train primary care providers in communities without access to specialty physicians. Telemedicine is the use of electronic communications, such as video and audio, to deliver real-time healthcare services to remote locations. It may involve direct patient care or telementoring, in which experts connect with other providers. The AMA’s decision comes on the heels of the Epilepsy Foundation’s successful completion of two telemedicine pilot programs, which used a model called Project ECHO (Extension for Community Healthcare Outcomes).

One of the programs, Cincinnati ECHO, used videoconferencing to link specialists from the University of Cincinnati with primary care providers and other healthcare professionals in local communities in Ohio and surrounding states. These experts shared new research, conducted virtual clinics, gave lectures, and discussed how to manage patients with difficult-to-control seizures or complex needs. Together, the team of specialists and the community providers could also discuss patient cases and come up with a plan for how to deliver the best care for that individual.

“The program has allowed us to educate more than 100 primary care providers,” says Privitera, who directs the project. “Using telemedicine, we can connect with these doctors and deliver pertinEnt information—directly to their offices or even their living rooms.”

The other pilot program, called Managing Students with Seizures ECHO: The Importance of School Nurses, was conducted in collaboration with the American Academy of Pediatrics and used the ECHO model to connect school nurses around the country with epilepsy experts to help them better treat students with seizures in school settings.

This fall, the Epilepsy Foundation plans to expand both programs.

“The ECHO model is helping us close the healthcare delivery gap,” says Privitera. “It is giving us the opportunity to let doctors in rural communities know that, ‘Yes, there is something you can do for these patients.’”

Originally published in EpilepsyAdvocate Fall 2019.