In March 2020, as the COVID-19 pandemic forced epilepsy centers to shut down, Epilepsy Learning Healthcare System (ELHS) teams sprung into action, working directly with patients and families.
The ELHS is a patient-centered network hosted by the Epilepsy Foundation on behalf of a large group of partners across the country, including 12 epilepsy centers, key professionals, and community services organizations. The ELHS centers gather data into a central registry and analyze it to identify gaps in care or outcomes needing improvement.
During COVID-19, ELHS centers have taken many important steps to identify and correct these gaps in care. They established a Telemedicine Workgroup of clinicians within four weeks. Teams that had never offered telehealth before had services up and running within weeks.
ELHS teams created a telemedicine checklist tool in English and Spanish. To date, there have been more than 500 downloads of the English checklist and nearly 100 of the Spanish version.
They also disseminated telemedicine tools through ELHS centers, local Epilepsy Foundation offices, and via epilepsy.com. ELHS members shared their success and best practices with the entire network so others could benefit from the findings.
ELHS then took feedback from more than 100 users to evaluate the usefulness of the telemedicine tools. While healthcare providers indicated telehealth could be used for most typical follow-up visits, access to broadband internet, computers, or devices with cameras proved to be a limitation for some families.
Because the transportation barrier was removed from the process, families found telehealth visits to be much easier for them and their family.
“Telehealth has made seeing my epileptologist much more accessible, not only for me, but for caregivers, too,” said Alison Kukla, who has epilepsy. “Since I don’t drive, before telehealth, my husband would have to take time off work, and we’d make the five-hour round trip to the appointment. Now we can do the appointment right at home and we get the same wonderful care.”
The Epilepsy Foundation is continuing to advocate for expanded access to telehealth. Join our Speak Up Speak Out advocacy network epilepsy.com/about-us/advocacy. For more information about ELSH, visit epilepsy.com/elhs.