Attendees of the 2018 Learning Healthcare Systems Meeting

In 2018, the Epilepsy Foundation was awarded a PCORNet Learning Health System Network Pilot Collaborative grant to establish an Epilepsy Learning Healthcare System.

Definition of a learning healthcare system:

“A learning healthcare system is one in which science, informatics, incentives, and culture are aligned for continuous improvement and innovation, with best practices seamlessly embedded in the care process, patients and families active participants in all elements, and new knowledge captured as an integral by-product of the care experience,” from Best Care at Lower Cost: The Path to Continulously Learning Health Care in America

Our Vision

We envision a healthcare system in which we learn from every person with epilepsy, and in turn, improve outcomes for everyone with epilepsy. We do this by regularly collecting information about patient diagnosis, evaluation and care from doctors and hospitals, then gathering and analyzing it centrally in a standardized way. This information is then rapidly returned to answer questions about:

  • Quality care (Is there a better way of doing things that can be shared among providers?)
  • Diagnostic processes (For example, what are the necessary and important tests, and how fast should they be done?)
  • Comparative effectiveness of treatments (Should one treatment be the first choice, or should treatment be individualized?)
  • Usefulness of self-management strategies and healthcare and community-based services (How can we ensure every person with epilepsy lives their best life?)

Ultimately, a learning healthcare system in epilepsy will also support multi-site quality improvement projects, clinical trials, and observational research studies to improve seizure control for all people with epilepsy.

We want to change healthcare and research for the better, for all people with epilepsy.

Key Issues

  • Epilepsy is not a single disease. It is a diverse set of disorders with genetic and acquired causes. There are a variety of seizure types, epilepsy syndromes, and outcomes.
  • Despite over a dozen new drugs becoming available in the last two decades, thirty percent of people with epilepsy still live with uncontrolled seizures. These new drugs have reduced side effects but have not changed the number of people with uncontrolled epilepsy. There is also little information about the comparative effectiveness of these different medications available to guide treatment decisions.
  • Wide variations in epilepsy care delivery and clinical practice may contribute to poor individual outcomes.
    • Only half of children who arrive in the emergency department with status epilepticus (life-threatening prolonged or repetitive seizures) receive timely treatment. 
    • 25% of adults with active epilepsy on anti-seizure medication had not seen a neurologist or epilepsy specialist within the last year.
    • 75% of adults with active epilepsy that are not on medication had not seen a neurologist or epilepsy specialist within the last year.
    • Across the age spectrum, there are racial and ethnic disparities in access to comprehensive epilepsy care.

Together We Are Stronger

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

Leadership

The Epilepsy Learning Healthcare System executive leadership team is composed of:

  • Brandy Fureman PhD (Networking Coordinating Center and Community Engagement)
  • Zach Grinspan MD (Pediatric Epilepsy Learning Healthcare System)
  • Susan Herman MD (Adult Epilepsy Learning Healthcare System)
  • Jeff Buchhalter MD, PhD (Quality Improvement Lead)

If you want to get involved with the Learning Healthcare System, please contact Dr. Kathleen Farrell (kfarrell@efa.org). 

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Reviewed By: 
Jacqueline French MD | Chief Scientific Officer
on: 
Wednesday, April 4, 2018