People Living with Epilepsy and Families

People living with epilepsy and their families are a critical part of the EHLS. The ELHS community needs you on our team. To help the ELHS get started, a Community Engagement Core is engaging people with epilepsy and families from across the epilepsy community. 

As the ELHS gets started at individual epilepsy centers, there will be more volunteer opportunities to get involved at the local level. There are many ways to participate - sharing your experiences, needs, hopes, successes, and challenges makes sure that your voice helps determine priorities for the Learning Network. Most importantly, participating in the ELHS with your health care team will help us learn directly from you. 

Benefits of participating in the Learning Network include:

  • Developing new leadership skills
  • Making a difference for people living with epilepsy in your community
  • Engaging with your local epilepsy program
  • Improving connections with your medical providers and their peers
  • Connecting with other individuals living with epilepsy and their families
  • Participating in and leading sessions designed specifically for people living with epilepsy

To connect with ELHS and learn more about how you or your family can participate, email ELHS@efa.org.

Epilepsy Healthcare Centers and Providers

Epilepsy healthcare centers and medical providers across the country are vital partners in the mission of the ELHS Network. The ELHS will continue to expand and improve its efforts along with clinical leaders who have dedicated their careers to improving the quality of life for people living with epilepsy and their families. The ELHS is partnering with the National Association of Epilepsy Centers to provide opportunities for healthcare providers to participate in the ELHS.

Potential benefits to healthcare centers participating in the ELHS include:

  • Improved outcomes for patients
  • Opportunities to co-design and test innovations to transform epilepsy care
  • Quality improvement and Chronic Care Model mentoring and training
  • Tools to facilitate, streamline and improve care
  • Opportunities to collaborate and share ideas, approaches and tools
  • Access to curated tools and resources to support testing
  • Real time data support
  • Electronic data transfer
  • Automated reports
  • Decision support
  • Standardized collection of patient reported outcomes
  • Efficient communication of data analysis allowing enhanced quality improvement opportunities
  • Accelerate generation of new knowledge through research

To connect with ELHS and learn more about our network, email ELHS@efa.org.

Partners

The Epilepsy Foundation is proud to be working with the following partners in this effort.

Rare Epilepsy Network

The Rare Epilepsy Network, or REN for short, is a collaboration between the Epilepsy Foundation, RTI International, Columbia University and many different organizations that represent patients with a rare syndrome or disorder that is associated with epilepsy or seizures.

James M. Anderson Center for Health Systems Excellence (Cincinnati Children’s)

The James M. Anderson Center for Health Systems Excellence was established in 2010 to dramatically expand work being done in transformational improvement. Cincinnati Children’s is committed to providing the best outcomes, the safest care for children and families, and applying all that is learned through research. Within Cincinnati Children’s, the center promotes, facilitates and supports a wide range of improvement initiatives. At the same time, Cincinnati Children’s hopes to be an inspirational model – or exemplar – for others who are beginning or are well along the way on the same journey.

National Association of Epilepsy Centers

The NAEC is a non-profit association with a membership of more than 240 specialized epilepsy centers in the United States. NAEC was founded in 1987 by physicians committed to setting a national agenda for quality epilepsy care. NAEC published its first iteration of its Guidelines for Essential Services, Personnel, and Facilities in Specialized Epilepsy Centers in 1990. The Association continues its work to develop standards of care and promote their adoption by epilepsy centers through its accreditation program. NAEC pursues an active agenda, educating public and private insurers, policymakers, and government officials about the complexities of and need for patient access to specialized epilepsy services.

Epilepsy Foundation Network

The Epilepsy Foundation Network is composed of 50 local offices aligned with a shared purpose of improving quality of life for people with epilepsy. The nationwide network shares a spirit of collaboration and commitment to each other and to the millions of individuals and families the Epilepsy Foundation is privileged to serve.

American Epilepsy Society (Practice Committee)

The AES is one of the oldest neurological professional organizations in this country. The Society seeks to promote interdisciplinary communications, scientific investigation and exchange of clinical information about epilepsy. Membership consists of clinicians, scientists investigating basic and clinical aspects of epilepsy, and other professionals interested in seizure disorders. Members represent both pediatric and adult aspects of epilepsy.

American Academy of Neurology (Quality Subcommittee, AXON registry)

The AAN is a professional society representing over 34,000 neurologists and neuroscientists. As a medical specialty society it was established in 1948 to advance the art and science of neurology, and thereby promote the best possible care for patients with neurological disorders.

Child Neurology Society

The Child Neurology Society has a mission to provide for the medical needs of present and future generations of children with neurological diseases and disorders.

Child Neurology Foundation

The Child Neurology Foundation connects partners from all areas of the child neurology community so those navigating the journey of disease diagnosis, management, and care have the ongoing support of those dedicated to treatments and cures.

Epilepsy Study Consortium

The members of the Epilepsy Consortium are world renowned experts in antiepileptic drug therapeutics and various aspects of clinical trial design and statistics. The Consortium works to improve care for patients with epilepsy.

To connect with ELHS and learn more about our partners, email ELHS@efa.org.

Research 

The ELHS model emphasizes that research is done in collaboration with, not for or about, people living with epilepsy and their families. The voices of people are at the core of EHLS.

Across the ELHS Network, individuals with epilepsy, parents, caregivers, clinicians and researchers will work together to identify research questions, design and carry out studies to answer important questions about epilepsy, and to implement what they've learned.

Consistent with the mission of the EHLS, research will focus on improving the health and care of people with epilepsy. With this as the driving force behind the work of EHLS, research can be subdivided into four interdependent areas of focus:

  • Quality improvement (QI)
  • Comparative effectiveness/Epidemiology
  • Clinical trials
  • Laboratory research

To connect with ELHS and learn more about our research, email ELHS@efa.org.

Authored By: 
Elaine Kiriakopoulos MD MSc
Authored Date: 
09/2018
Reviewed By: 
Patricia O. Shafer RN
MN
on: 
Saturday, September 1, 2018