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

EHLS Infographic


In an LHS:

  • Information is provided by individuals and families within the learning system.
  • This information (data) is continuously analyzed to gain new knowledge.
  • The results help everyone involved gain a better understanding of a disease process and how medical interventions affect individual health outcomes.
  • This new knowledge will guide improvements in the quality of medical care each person will receive.

WHY do we need ELHS?

  • Epilepsy is not a single disease. It is a diverse set of disorders with different causes. Some may have a genetic cause, other epilepsies may be caused by a problem that occurs after birth (called acquired). There are a variety of seizure types, epilepsy syndromes, and outcomes.
  • Despite over a dozen new drugs becoming available in the last two decades, 30 to 40% of people with epilepsy still live with uncontrolled seizures. Newer 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, or which drugs may work best, to guide treatment decisions.
  • Wide variations in epilepsy care delivery and clinical practice may contribute to individual outcomes.
    • Only half of children who arrive in the emergency department with status epilepticus (life-threatening prolonged or repetitive seizures) receive timely treatment.
    • 1 out of 3 adults with active epilepsy on anti-seizure medication had not seen a neurologist or epilepsy specialist within the last year.
    • Among different ages, there are racial and ethnic disparities in access to comprehensive epilepsy care.

HOW can ELHS help families like mine?

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 studying information (not tied to a person’s name or identifiable information) about a person’s diagnosis, treatment, evaluation and care from healthcare providers, then analyzing it in a standardized way. This information can then be used to answer questions about:

Quality Care

Improving the quality of care for people with epilepsy requires thinking beyond access to care. It's important to share what is known about the best possible care for individuals. Quality care ensures that the health care services provided to individuals and groups of people with epilepsy will improve health outcomes. Quality care requires that healthcare is:

  • Safe

    • Uses best medical practices

    • Minimizes risks and harm to patients

    • Avoids preventable injuries

    • Reduces medical errors

  • Effective

    • Based on scientific knowledge

    • Uses evidence-based guidelines

  • Timely

    • Reduces delays in providing and receiving health care

    • Improves and expand accessibility

    • Achieves patient, family and caregiver goals

    • Provides rapid communication of new knowledge that can influence health outcomes

  • Efficient

    • Maximizes available resources

    • Avoids waste

    • Equipped to adapt new therapies and technologies

  • Equitable: 

    • Care that does not differ in quality according to

      • gender, race, ethnicity

      • socioeconomic status

      • geography

  • Person Centered and Transition Sensitive

    • Recognizes the preferences of individuals

    • Supports the goals of individuals

    • Accounts for the culture of communities

    • Recognizes lifelong needs of people living with epilepsy

Diagnostic Process

If a person receives a diagnosis that is accurate and made in a timely manner, they have the best chance for a positive health outcome. Arriving at the correct diagnosis in some cases is straightforward. However, often the journey to a diagnosis of epilepsy can be more complex, require many tests and consultations from medical specialists.

Doctors are able to make a diagnosis by identifying a condition or disease based on signs and symptoms. A diagnosis of epilepsy is generally made when seizures occur more than once without a known reason. However, over half of time, epilepsy has no identifiable cause. Doctors have to choose from a long list of diagnostic tests to come to the most accurate diagnosis for each person who presents with possible epilepsy. The ELHS Network will work to help determine the best steps for healthcare providers to take when completing a diagnostic evaluation for epilepsy.

Understanding the process of how a diagnosis is made in epilepsy is critical. It will allow for healthcare providers to:

  • Improve medical care people by sharing the most appropriate steps to obtain an accurate diagnosis
  • Limit unnecessary testing
  • Decrease stress on person being evaluated - essential testing only
  • Decrease direct and indirect costs to individuals and family members
  • Lower health care system costs
  • Improve clinical treatment decision making

Comparative Effectiveness of Treatments

The ELHS team is committed to learning more about the effectiveness of epilepsy treatments and how medical teams make treatment decisions. The ELHS aims to answer important questions that include:

  • What are the treatment choices being made for people with epilepsy?
  • Should there be a standard first choice for therapy in epilepsy?
  • Should epilepsy treatment choices be individualized?
  • Are common standard treatments in epilepsy working?
  • How do standard treatments compare to to alternative therapies?

Comparing the effectiveness of treatments will allow for:

  • Improved treatment outcomes
  • Research leading to new and more effective therapies
  • Treatment decisions based on scientific and clinical data
  • Incentives for more meaningful drug and device development
  • Innovative strategies
  • Advocacy to ensure the best treatments are accessible to all

The Value of Self-Management Strategies

Managing epilepsy can be challenging. Each person and family with epilepsy will handle challenges differently. Seizures can sometimes make it hard to work, go to school, drive, and take part in social activities. Self-management strategies help to empower people to take control of their health, and build skills to live life to the fullest.

Self-management does not mean that a person with epilepsy manages their health alone. Self-management requires collaboration between the person with epilepsy, their family, caregivers, friends and health care providers. For many people, self management skills help them to:

  • Cope with symptoms related to their seizures
  • Manage side effects secondary to treatment
  • Decrease stress
  • Manage medications, diet and alternative therapies
  • communicate with their healthcare team
  • improve mood and energy level
  • Implement a healthy diet and regular exercise

The ELHS Network will help determine the value of self-management strategies for persons living with epilepsy. We will work to determine which self management strategies have the greatest impact on improving day-to-day life for people with epilepsy. This knowledge can then be shared across our nationwide network to help maximize the number of people with epilepsy who may benefit by implementing self management tools and skills.

The Role of Community Based Strategies

Empowering individuals and communities to take action for their health can lead to improved health outcomes. Communities (including neighborhoods, towns, cities, districts, counties, and others) can play a significant role in providing education, resources and supports to improve the quality of life for people living with epilepsy. Communities have the ability to promote:

  • Health
  • Wellness
  • Encouragement and support
  • Inclusion and social participation

The ELHS aims to:

  • Identify, build, activate and evaluate community programs and supports.
  • Engage communities and community leaders to work together.
  • Develop and promote lasting strategies that support people with epilepsy.
  • Ensure that every person with epilepsy is able to live their best life.

Community based programs and strategies are designed to reach people outside of traditional health care setting. These settings include:

  • Schools
  • Housing units, group homes,
  • Youth and senior centers
  • Worksites
  • Faith based centers
  • Amateur sports clubs

Community based programs promote and support health and wellness by educating people with epilepsy about:

  • Access to health services
  • Chronic diseases
  • Mental illness/behavioral health
  • Pregnancy
  • Substance abuse
  • Diet
  • Physical activity
  • Injury prevention

The ELHS Network will work to determine the role community based strategies and programs can play in positively impacting people and families living with epilepsy.

Authored By: 
Elaine Kiriakopoulos MD, MSc
Authored Date: 
Reviewed By: 
Kathleen Farrell MB, BCh, BAO
Alison Kukla MPH
Thursday, January 28, 2021