Planning for Epilepsy Health Disparities Research Through Community Co-Production.”

Although epilepsy (also called seizure disorders or the epilepsies) can affect people from all demographic groups, the impact of having epilepsy is not equal among all population groups. There are disparities in epilepsy that create worse health outcomes for some individuals. Differences have been documented by race/ethnicity group, income group, geographic location, and by insurer type. Epilepsy disparities result in worse mental health, more frequent emergency department visits, increased hospitalization rates, and increased risk of early death. This planning grant was developed to study the drivers of disparities in local communities and to develop plans for interventions that will reduce the disproportionate burden. This planning grant builds collaborations, capacity and research expertise to conduct health disparities research within the Epilepsy Learning Healthcare System (ELHS). The ELHS network is a national quality improvement epilepsy care network. ELHS is poised to become a platform to conduct a wide range of research studies on epilepsy that are co-produced by patients and families, healthcare providers and researchers. The planning team benefits from a strong and long-standing community-academic partnership between the Epilepsy Foundation and Mass General Hospital/Harvard University. We will develop methods to sustainably engage local community partners and epilepsy patient/family partners in co-producing priorities for epilepsy health disparities research, pilot strategies to identify and monitor differences in health outcomes and promote research readiness for future interventions. The planning team involves a broad range of perspectives, research disciplines, and career stages. The planning grant will allow us to build the unique capability to conduct rigorous longitudinal studies on epilepsy outcomes with ELHS center teams and their local community partners, and to spread successful interventions across the network and beyond.