Community-Engaged Health Equity Research in Neuroscience Initiative (HERN)

The Epilepsy Foundation, together with Massachusetts General Hospital and additional collaborators, was awarded a planning grant aimed at developing a heath disparity research agenda for epilepsy. It is part of the National Institute of Neurological Disorders and Stroke (NINDS) of the National Institutes of Health’s Community-Engaged Health Equity Research in Neuroscience Initiative, or HERN.

The Foundation’s HERN grant project "Epilepsy Health Disparities Research through Community Co-Production" focuses on understanding the local drivers of epilepsy disparities for Black and African American people with epilepsy in the greater Philadelphia area. The goal is to expand to other areas by working within the Foundation’s Epilepsy Learning Healthcare System (ELHS).

Although epilepsy affects people across all demographic groups, decades of research have shown that the burden is not equally shared. The HERN Project seeks to address documented epilepsy disparities among Blacks and African Americans, such as:

• Higher risk of early mortality (SUDEP, status epilepticus)
• Higher odds of frequent Emergency Department visits
• Lower rates of medication adherence
• Lower rates of evaluation for epilepsy surgery
• Underrepresented in epilepsy clinical trials

An advisory committee of African Americans and Blacks who are living with epilepsy, are caregivers or providers to those living with epilepsy, and/or have expertise with community engaged research focused on epilepsy help to govern the Foundation’s HERN project.

Image

Photo caption: Top Row: Gregg Robinson, Caregiver; Bobby Graves, Caregiver; Lowell Evans, Community Advisor; Bee Martin Lee, EFA CEO; Dr. Jeff Buchhalter, HERN Aim 2 Lead; Dr. Kathleen Farrell, EFA ELHS Executive Director; Dr. Rakale Quarrels, Research Advisor; Shel Lessington, EFA HERN Program Coordinator. Second Row: Tanisha Tyler Graves, Community Advisor; Rachel Robinson, Community Advisor; Tonya Nash, Community Advisory Committee Chair; Thometta Cozart, EFA HERN Project Director; and Dr. Brandy Fureman, EFA HERN Co-Principal Investigator. 

The Epilepsy Health Disparities Research through Community Co-Production Planning Grant has three aims:

1. Work with interdisciplinary community-engaged teams to create a foundational strategy to co-produce future interventions for epilepsy health disparities and develop a prioritized research agenda.
2. Improve the collection of information in epilepsy center populations which can be used to identify, monitor, and compare outcomes across stratified groups for future epilepsy disparities studies.
3. Describe intersectionality of race, ethnicity, and Area Deprivation Index (ADI) on registry representation outcomes. 

Image

"This planning grant represents a critical step in addressing the disparities that have persisted for far too long in epilepsy care," said Thometta Cozart, MPH, MS, CPH, CHES, Senior Director of Multicultural Outreach and Health Equity at the Epilepsy Foundation. "Communities most affected by disparities have repeatedly told us that solutions must be shaped with them, not simply delivered to them. This includes ensuring that the experiences of Black and African American patients, who face some of the greatest barriers to care, are centered in our work. We are eager to begin our work with this grant to ensure that equitable, high-quality support reaches every person with epilepsy, no matter their background or circumstances."

We Want to Hear From You

In efforts to address Aim 1, EFA is recruiting Blacks and African Americans living with epilepsy in the Philadelphia area to participate in virtual focus groups and interviews to discuss healthcare and epilepsy-related disparities. 

If you are willing to identify barriers to care, including socioeconomic challenges, healthcare navigation issues, and neighborhood influences, to help us develop and test tools to advance equitable epilepsy care, reduce disparities, and create scalable solutions for communities nationwide, then we want to hear from you!

Want to share your experience, but don't want to share in a group? Interested in giving your opinion during a virtual interview one-on-one with the facilitator? Let us know your availability to participate during these dates and time:  

May 26th - 11 AM - 1 PM EST; 5 PM - 7 PM EST
May 27th - 11 AM - 1 PM EST; 5 PM - 7 PM EST
June 2nd - 11 AM - 1 PM EST; 5 PM - 7 PM EST
June 3rd - 11 AM - 1 PM EST; 5 PM - 7 PM EST

Caregivers, individuals living with epilepsy and epilepsy providers in PA are all invited to participate in interviews. Email us at [email protected] to confirm your preferred date and time.

Eligibility

Listen to HERN Evaluator Director Dr. Brian Gilchrist explain the eligibility criteria and recruitment plan during the Community Partner Recruitment Meeting at Tacony Baptist Church on 4715 Disston Street, Philadelphia, PA 19135 on February 20, 2026 here.

Want to participate in this project, then sign up today:

Eligibility Criteria:

Eligible participants “who are people living with epilepsy and caregivers” will receive a $50 gift card for successfully participating in a virtual focus group or completing a virtual key informant interview. 

This study was approved by the  Institutional Review Board (IRB) of WCG (Protocol #1R34NS140007-01) on February 26, 2026.

If you are interested in opportunity and have questions, please contact us at [email protected] and/or check back on this page for updates.