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Neurological Disorders

Using Epilepsy Patient Data to Improve Health Outcomes

Brandy Fureman, Ph.D.

Chief Outcomes Officer, Epilepsy Foundation

In an exciting new model, patients and families, healthcare providers, and researchers work together as equal partners to improve both the quality of care and outcomes for patients. This is called the Learning Healthcare System.

The Epilepsy Learning Healthcare System (ELHS) is a patient-centered network that is hosted by the Epilepsy Foundation and the James M. Anderson Center for Health Systems Excellence at Cincinnati Children’s Hospital on behalf of a large group of partners. ELHS’s vision is for all people with epilepsy to live their highest quality of life, striving for freedom from seizures and side effects.

What is epilepsy?

The epilepsies are a group of neurological disorders that all share spontaneous seizures as a hallmark symptom. Collectively, the epilepsies are the fourth most common neurological disorder and affect people of all ages.  The epilepsies have many different causes and a broad spectrum of severity.

Epilepsy often goes undiagnosed or misdiagnosed. Thirty percent of people living with epilepsy do not have full seizure control despite treatment. In addition to seizures, there are other health issues that often go unaddressed.


The Epilepsy Learning Healthcare System

Twelve epilepsy centers in the United States are partnering with the Epilepsy Foundation and other key professional and community services organizations to learn from every patient at every visit. Here’s how it works:

  • ELHS centers across the country gather data into a central registry.
  • The network analyzes data to identify gaps in care or outcomes.
  • Plan-Do-Study-Act (PDSA) cycles.
  • Members share their successful improvements with the network during monthly webinars and twice-yearly learning sessions.
  • Patients and families participate at every step to drive priorities, design new initiatives, and give feedback on improvements.

ELHS will transform epilepsy care, harnessing the power of people with epilepsy and their families, healthcare providers, and community services teams to optimize seizure control and quality of life. We won’t stop until we get there for everyone with epilepsy. You can join us by going to

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