LANDOVER, Md. – Today, the Epilepsy Foundation and its partners announced the launch of the Epilepsy Learning Healthcare System (ELHS), a multi-stakeholder collaboration to improve outcomes by implementing best practices and continual learning. The ELHS is designed to gather data about people with epilepsy from clinics around the country and analyze it centrally to identify practices that lead to better outcomes. Data collected include diagnosis, evaluation and care from healthcare providers, as well as information about seizure frequency, treatment side effects, comorbidities, self-management, and quality of life from people with epilepsy and their care partners.
“Our vision for the Epilepsy Learning Healthcare System is for all people with epilepsy to live their highest quality of life, striving for freedom from seizures and side effects, and we won’t stop until we get there,” said Brandy Fureman, Ph.D., vice president of research & new therapies, Epilepsy Foundation. “We are excited about the response from innovative pediatric and adult sites who are joining this collaboration because they are interested in transforming care and research. Our current healthcare and community services system is fragmented; we intend to change that with a system where we learn from every person with epilepsy and, in turn, improve outcomes for everyone living with epilepsy.”
Six pioneer hospitals, accredited by the National Association of Epilepsy Centers (NAEC), have committed to the ELHS: Children’s Healthcare of Atlanta, Partners Healthcare (including the Massachusetts General Hospital and Brigham and Women’s Hospital), Beth Israel Deaconess Medical Center, Barrow Neurological Institute, and Children’s Hospital of Philadelphia. Additional epilepsy centers across the country are in the process of joining the ELHS.
"NAEC enthusiastically supports the goals of the ELHS and is pleased to partner with the Epilepsy Foundation and our member centers on this initiative,” said Nathan Fountain, M.D., NAEC President. “Incorporating NAEC’s standards of care and resources for member centers in the ELHS process will help us all achieve our mutual goal of promoting quality comprehensive care to all people with epilepsy.”
Despite more than a dozen new medications becoming available in the last two decades, 30% of people with epilepsy still live with uncontrolled seizures. These new medications often have reduced side effects but have not changed the number of people living with uncontrolled seizures. There is also not enough information about the comparative effectiveness of these different medications available to guide treatment decisions. For some rare epilepsy syndromes, there are no approved therapies that control seizures. Other treatments that don’t involve medications, such as surgery, dietary therapy, and devices, can be helpful but are not widely used. Furthermore, wide variations in epilepsy care delivery and clinical practice may contribute to poor individual outcomes.
A learning health system is structured so that patients and their families, community services providers, clinicians, researchers and health system leaders work together to design, implement, and disseminate collaborative research and quality improvement. This evidence-based approach can dramatically accelerate the ability to generate new knowledge and ensure it is applied so that the health of patients and populations improve.
The ELHS grew out of the Rare Epilepsy Network, a research collaboration of more than 30 rare epilepsy organizations, which is hosted by the Epilepsy Foundation and was partially funded through the Patient-Centered Outcomes Research Institute (PCORI). The ELHS is made possible by a Learning Health System Network Pilot Collaborative grant awarded earlier this year by PCORI and the James M. Anderson Center for Health Systems Excellence. The ELHS is also funded by contributions from the NAEC, participating ELHS centers, industry sponsors, and the Epilepsy Foundation.
Community-based partners include REN organizations and the local Epilepsy Foundation network. Patients and caregivers “co-produce” the activities of the ELHS through the Community Engagement Core. The James M. Anderson Center for Health Systems Excellence provides mentorship and the Division of Biomedical Informatics at the Cincinnati Children’s Hospital Medical Center provides the registry infrastructure for the ELHS. The ELHS Community Engagement Core is directed by Alison Kukla, MPH; the Clinical Core is co-directed by Susan Herman, MD and Jeffrey Buchhalter, MD, PhD; the Data Core is co-directed by Lidia Moura, MD, MPH, and Nick Abend, MD; and the Coordinating Center is directed by Brandy Fureman, PhD, and managed by Kathleen Farrell, MB, BCh, BAO.
For more information about the Epilepsy LHS or to become a participating site, please visit epilepsy.com/research.
According to the World Health Organization, epilepsy is the most common serious brain disorder worldwide with no age, racial, social class, national or geographic boundaries. The U.S. Centers for Disease Control & Prevention (CDC) estimates that 3.4 million people in the United States are affected by epilepsy. It is the underlying tendency of the brain to produce seizures which are sudden abnormal bursts of electrical energy that disrupt brain functions.
About the Epilepsy Foundation
The Foundation is leading the fight to END EPILEPSY®. With a network of nearly 50 partners throughout the United States, the Foundation connects people to treatment, support and resources; leads advocacy efforts; funds innovative research and the training of specialists; and educates the public about epilepsy and seizure first aid. For more than five decades, the Epilepsy Foundation has shone a light on epilepsy to promote awareness and understanding, and to advocate for laws that matter to people with epilepsy, while also funding $65 million for epilepsy research and supporting 3,076 epilepsy investigators and specialists in their early careers. Over the past 17 years, in partnership with the CDC, the Epilepsy Foundation has helped to improve access to care for people with epilepsy, expanded its digital reach and online resources in homes across the country, and trained more than 500,000 school and community personnel in how to recognize seizures and administer seizure first aid. The Foundation has also assisted more than 108,000 people through its 24/7 Helpline in the past five years, and continues to focus on innovation, new therapies, community services, advocacy and education as key priorities. To learn more visit epilepsy.com or call 1.800.332.1000. Follow us on Facebook and Twitter.
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