Epilepsy Learning Healthcare System (ELHS) for Quality Care & Outcome Improvement
Epilepsy Foundation of America
Summary
The Epilepsy Learning Health System (ELHS) is a quality improvement and research network to improve outcomes for people with epilepsy. The ELHS is designed as a model of value-based chronic care for epilepsy as envisioned by the National Academies of Medicine Committee in their landmark reports "The Learning Health System" and "Epilepsy Across the Spectrum: Promoting Health and Understanding". The ELHS network is a collaboration among clinicians, patients and researchers that promotes the use of data for multiple purposes including one-on-one clinical care, population management, quality improvement and research. The ELHS Registry includes data on children and adults with epilepsy collected during the process of standard epilepsy care. These data are used to create population health reports and to track changes in outcomes over time. ELHS teams use quality improvement methods, such as Plan-Do-Study-Act (PDSA) cycles, to continuously learn how to improve care.
Description
The Epilepsy Learning Healthcare System (ELHS; pronounced el-is) involves patients and families living with epilepsy, clinicians who provide epilepsy care (including pediatric and adult epileptologists, neurology nurses, and others), community services providers, as well as researchers with clinical research expertise in community-based, observational, interventional, implementation and dissemination studies. Each stakeholder agrees to work together to improve outcomes for people with epilepsy. NETWORK AIM The purpose of the network is to improve seizure control and quality of life for people…
Eligibility
- Age range
- Not specified
- Sex
- All
- Healthy volunteers
- No
Inclusion Criteria: * In order to be eligible to participate in this registry-based study, an individual must meet all of the following criteria: * Patient is in an established care relationship with the ELHS site Exclusion Criteria: * An individual who meets any of the following criteria will be excluded from participation in this registry-based research study: * Patients who are not currently in nor expect to be in an established care relationship with the ELHS site (for example, patients who are being seen at the center for a second opinion only). * Patients who do not, after dia…
Interventions
- OtherClinical care and quality improvement
All eligible patients at each center will be included in the registry for clinical care, quality improvement and other activities that do not meet the regulatory requirements of human subjects research. Use of data for these purposes is not considered to be a human subjects research activity and will be covered under a Business Associates Agreement and a Participation and Data Use Agreement.
Locations (13)
- Barrow Neurological Institute Comprehensive Epilepsy CenterPhoenix, Arizona
- Children's Hospital Los AngelesLos Angeles, California
- University of Southern CaliforniaLos Angeles, California
- UC Health University of Colorado AnshutzAurora, Colorado
- Epilepsy FoundationBowie, Maryland
- Partners - Massachusetts General Hospital Epilepsy Service (MGH)/ Partners - Brigham and Women's (BWH)Boston, Massachusetts