Although children and youth represent one of the fastest growing populations affected by epilepsy, many do not have access to pediatric neurologists and high-quality coordinated care provided in a medical home. This is of even greater significance in rural and medically underserved areas.
Since 2013, the American Academy of Pediatrics has been serving as the Coordinating Center for Strategic Approaches to Improving Access to Quality Health Care for Children and Youth with Epilepsy (Center) under Health Resources and Services Administration (HRSA) Maternal Child Health Bureau (MCHB). The overarching vision of the Center to improve access to sustainable, coordinated and comprehensive quality care for CYE, with an emphasis on those experiencing health disparities and/or residing in rural or medically underserved communities.
The goals of the Center are to provide support and technical assistance to the seven HRSA/MCHB Strategic Approaches to Improving Access to Quality Health Care for Children and Youth with Epilepsy grantees, and to evaluate the effectiveness of project activities. The
grantees for the 2016-2019 grant cycle include:
Boston Medical Center
Children's Hospital of Philadelphia
Cleveland Clinic Foundation
Epilepsy Foundation of Texas
Epilepsy Foundation of Western/Central Pennsylvania
Michigan Department of Health and Human Services
University of Michigan
The American Academy of Pediatrics (AAP) will accomplish these goals by leveraging its structure, expertise, and national partners to assist grantees with developing quality improvement (QI) learning collaboratives, while also providing guidance to grantees on evidence-based models, best practices, and strategies regarding the patient/family-centered medical home model, youth transition using the Got Transition Six Core Elements of Health Care Transition, and telehealth/telemedicine/mobile health. Further, the Coordinating Center will implement University of New Mexico Project Extension for Community Health Outcomes (Project ECHO) as an evidence-based telehealth model designed to build the capacity of primary care providers through education and training in order to meet the needs of CYE within their medical home.
Goal: Implement a program infrastructure to ensure that CYE obtain sustainable, coordinated and comprehensive quality care.
Goal: Develop state-of-the-art, high quality, QI learning collaboratives and protocols for grantees to ensure they have access to relevant evidence-based models, best practices, and strategies.
Goal: Leverage telehealth to increase access to care for CYE in underserved areas/populations and increasing the primary care provider capacity.
Goal: Develop and implement a comprehensive evaluation methodology to support and monitor outcomes of the Coordinating Center and grantees regarding the implementation, evaluation, and spread of evidence-based epilepsy-related services.
A broad-based national advisory committee oversees the activities of the Center, while ensuring that family and youth, education, quality improvement, systems, rural health/cultural/telemedicine, and evaluation are incorporated into each activity.
Children and youth with epilepsy constitute a population of children with unique health and social needs. The Center creates a structure to advance and support a strategy that draws on the resource capacity of grantees, subject matter experts, families, and youth to enhance access to essential services while creating enduring pathways for engagement and continuous learning.
V. Fan Tait, MD, FAAP
Chief Medical Officer
Trisha M. Calabrese, MPH
Director, Division of Innovation
Sarah Hueneke, MPH
Manager, Coordinating Center on Epilepsy
Amy Shah, MPH
Project Manager, ECHO
Jeanne Lapp, DC, MPH
The Coordinating Center is a cooperative agreement between the Maternal and Child Health Bureau (MCHB) and the American Academy of Pediatrics (AAP) to establish a multifaceted community-based system of care that ensures that Children and Youth with Epilepsy (CYE) have access to the medical, social, and other supports and services that they require to achieve optimal health outcomes and improved quality of life. This Web site is funded by the US Department of Health and Human Services (HHS), Health Resources and Services Administration (HRSA).