The Epilepsy Learning Healthcare System (ELHS)
In an era of fragmented care...the Epilepsy Learning Healthcare System is the only national system that transforms routine epilepsy visits into reliable data, practical tools, and shared solutions for clinicians and patients seeking faster seizure control and better quality of life.
Mission & Methods
In 2018, the Epilepsy Foundation was awarded a PCORNet Learning Health System Network Pilot Collaborative grant to establish an Epilepsy Learning Healthcare System (ELHS). Founded on the practice of coproduction (where people with epilepsy and their families are equal partners with clinicians) and connecting pediatric and adult epilepsy centers with each other and with community service providers, ELHS empowers all people to live their highest quality of life, striving for freedom from seizures and side effects.
The purpose of (ELHS) is to utilize data to identify and eradicate disparities in care and health outcomes through Quality Improvement (QI) initiatives, with the goal of advancing epilepsy practice and patient well-being. The goal is to make people better now, not years from now.
Improvement areas include seizure frequency reduction via improved seizure documentation and screening for barriers to medication adherence. They also include but are not limited to:
- Quality of life
- Screening for anxiety and depression
- Status epilepticus
- Transition of care
- Counseling on contraception and pregnancy
Tools & Resources Developed by ELHS
Explore the practical toolkits, checklists, and educational materials created to support epilepsy care, communication, and quality of life improvement.
Care Planning Toolkits
Telemedicine Checklists
Barriers Checklist & Related Resources
Medication Access Tools:
Addressing Cost of Epilepsy Medicines (Cómo Resolver el Costo de los Medicamentos Anticonvulsivos)
Using Motivation to Take Your Medicine (Cómo Motivarse a Tomar sus Medicamentos Anticonvulsivos)
Understanding How Insurance Can Help Pay for Medicine (Aprenda Cómo su Seguro Médico Puede Ayudar a Pagar sus Medicamentos)
Learning to Swallow Pills (Aprender a Tragar Pastillas)
Making Medicine Easier (Cómo Facilitar la Toma de Medicamentos Anticonvulsivos)
Making Medicine Taste Better (Cómo Hacer que los Medicamentos Anticonvulsivos Sepan Mejor)
Managing Daily Activities (Manejo de Actividades Diarias y Toma de Medicamentos Anticonvulsivos)
Remembering to Take Medicine (Recuerde que Debe Tomar sus Medicamentos Anticonvulsivos)
Understanding Side Effects of Seizure Medicine (Entender los Efectos Secundarios de los Medicamentos)
Taking Medicine in Public (Tomar Medicamentos Anticonvulsivos en Público)
Avoiding Running out of Your Anti-Seizure Medicine (Evitar quedarse sin medicamento antiepiléptico)
Barriers to Medication Adherence Screening Tools:
Algorithm for Matching Barriers to Interventions 4 10.13.20 (Algoritmo para conectar barreras con intervenciones)
Barriers to Adherence Tool - Checklist for Caregiver (Cosas que interfieren con su toma de medicamento anticonvulsivo Para padres y o personas encargadas de otro)
Barriers to Adherence Tool - Checklist for Patient(Cosas que interfieren con su toma de medicamento anticonvulsivo Para pacientes mayores de 11 anos)
Peer Education Tools
ELHS Case Report Forms
Standardizing Epilepsy Fields in the Electronic Medical Record (EMR)
Learn More
ELHS MilestonesIgnite Talks: Stories that Inspire Change
Hear directly from people living with epilepsy and their loved ones through powerful 10-minute Ignite Talks. These personal stories are a core part of each ELHS Learning Session and highlight the importance of co-production — where patients, families, and care teams work together to drive meaningful improvements.
ELHS centers learn from every patient at every visit. Guided by the Model for Improvement and the Chronic Care Model, standardized data is gathered from ELHS clinics across the country, agnostic of electronic health record (EHR) type, into a registry curated by the Data Coordinating Center. Data is received, processed and analyzed centrally to identify best practices that will lead to better outcomes for patients and families. Quality Improvement (QI) methodology in a shared-learning model drives the work of ELHS. Participating centers receive tailored, comprehensive data reports which enable tracking of progress both at the individual-, site- and network levels.
"ELHS has been instrumental in working towards a more defined method of recording outcomes. "
- William Trescher, MD, Penn State Hershey Children’s Hospital
ELHS Quality Measures of seizure frequency and time-since-last-seizure were adopted by the American Academy of Neurology in 2022, and demographic data being collected in ELHS is already shedding light on previously unexplored disparities in epilepsy care and outcomes for communities including LGBTQ+.
Learn More
View our Abstracts & PublicationsBenefits for all
What sets ELHS apart from a typical registry, is the ability to enact change in real-time. Patient Reported Outcomes (PROs) are linked with clinical records, enabling insights to a complete picture of health and readiness for pre-visit planning – enhancing the partnership between people with epilepsy and their providers.
"ELHS reinforces both the importance of how patient education and patient-provider communication impact outcomes. "
-Shawna Benard, MD, University of Southern California Keck School of Medicine
Return on investment for participating centers includes efficiencies in care delivery, use of methodology for divisional, departmental, and institutional quality measures, Maintenance of Certification credit, opportunities for career advancement and research, and the potential for demonstration of value with third-party payers.
"Through my involvement with ELHS, my understanding of Quality Improvement methodology has expanded exponentially, and this work has become an integral component of my clinical practice. "
-Jacob Pellinen, MD, University of Colorado Health
The UCGNI team are a pioneering site in the Epilepsy Learning Healthcare System (ELHS). Leaders, such as Dr. David Ficker, Anne Paul, Scott Badzik and Charles McClinon, are working to improve seizure control and quality of life for all people with epilepsy.
Learn More:
Contact us at elhs@efa.orgResources
Epilepsy Centers
Epilepsy centers provide you with a team of specialists to help you diagnose your epilepsy and explore treatment options.
Epilepsy Medication
Find in-depth information on anti-seizure medications so you know what to ask your doctor.
Epilepsy and Seizures Helpline
Call our Epilepsy and Seizures Helpline and talk with an epilepsy information specialist or submit a question online.
Tools & Resources
Get information, tips, and more to help you manage your epilepsy.
Related Stories
Press Releases
New Podcast Series Highlights Innovation, Advocacy, and Community Impact at the Epilepsy Foundation of America
Read Story Press Releases
113 Epilepsy Organizations Unite to Express Concerns about Leadership Change at the National Institute of Neurological Disorders and Stroke
Read Story