8:30 a.m.Welcome and Opening Remarks
Mary Jane England, Chair
IOM Committee on the Public Health Dimensions of the Epilepsies
8:45Public Testimony—Registered Speakers
Moderator: Mary Jane England
(3 minutes per speaker)
Claude Wasterlain, University of California, Los Angeles, School of Medicine, Department of Veterans Affairs Greater Los Angeles Health Care System
Jeffrey Catania, Children's Institute, Inc.
Louis Stanislaw, LJPS Creations—The Epilepsy Project LLC
Michelle Marciniak, CURE
Tracy Dixon-Salazar, University of California, San Diego, Howard Hughes Medical Institute
Carrie Baum, Greater Los Angeles Epilepsy Foundation
Jim Abrahams, Charlie Foundation to Help Cure Pediatric Epilepsy
Lisa Soeby, Hope for Hypothalamic Hamartomas
Lori Towles
Frances Jensen, American Epilepsy Society
Gary Mathern, International League Against Epilepsy
Joan Skluzacek, IDEA League
9:30Panel 1: The Impact of Epilepsy on Patients, Families, the Health Care System, and Society
Facilitator: Charles Begley
 9:30-9:40Panel Introductions
 9:40-9:50Direct Costs—Diagnosis and Treatment
David R. Lairson, University of Texas Health Science Center at Houston
 9:50-10:00Indirect Costs—Academic Achievement, Employment, and Productivity
John Langfitt, University of Rochester Medical Center
 10:00-10:10Quality of Life
Gus Baker, University of Liverpool and the Walton Centre for Neurology and Neurosurgery (via phone)
 10:10-10:20Impact Across Populations—Health Disparities and Considerations for Subpopulations
Samuel Wiebe, Hotchkiss Brain Institute at the University of Calgary Medicine
 10:20-11:00Discussion with the Committee

  • What is known about the impact of epilepsy on patients, families, the health care system, and society?
  • How is the impact of epilepsy measured for direct and indirect costs and quality of life? What are the limitations of these measurements?
  • What are the direct costs associated with epilepsy and how do those costs change over time and with severity of disease?
  • What are the indirect costs associated with epilepsy? How does epilepsy affect academic achievement, employment, and productivity?
  • What impact does epilepsy have on quality of life for patients and family members?
  • How does the impact of epilepsy vary across subpopulations (e.g., children, women, older adults, racial and ethnic minorities)?
  • How does stigma affect quality of life and how does stigma vary across cultures?
  • Where are the gaps in knowledge from a population perspective? From an individual and family perspective?
  • What data need to be collected to accurately capture the burden of the epilepsies, particularly with regard to differences in specific populations as well as differences in etiology, severity, and outcomes?
  • What is the future for collecting data and information on the impact of the epilepsies? How will advances in technology and electronic health records (EHRs) affect data collection efforts?
11:15Panel 2: Epilepsy Surveillance—Gaps and Opportunities
Facilitator: David Grant
 11:15-11:20Panel Introductions
 11:20-11:30Current State of Epilepsy Surveillance
Edwin Trevathan, St. Louis University School of Public Health
 11:30-11:40Building on Existing Public Health Surveillance Systems
Wayne H. Giles, National Center for Chronic Disease Prevention and Health Promotion
 11:40-11:50Lessons from the Development of a Canadian National System of Surveillance
Nathalie Jetté, University of Calgary Medicine
 11:50-12:00Challenges and Opportunities for Surveillance—The Patient and Family Perspective
Mary Macleish, Epilepsy Foundation of Arizona
 12:00-12:30Discussion with the Committee

  • What are the current mechanisms for surveillance of epilepsy?
  • How can epilepsy surveillance be better integrated with existing public health surveillance and survey systems?
  • How can surveys and registries be used to better assess the impact of the epilepsies?
  • What are the challenges associated with collecting data on specific subpopulations (e.g., children, women, older adults, racial and ethnic minorities)?
  • What are the gaps and opportunities?
  • What can be learned from international epilepsy surveillance models?
  • What is the future for epilepsy surveillance? How will advances in technology and EHRs affect epilepsy surveillance?
12:30 p.m.Lunch
1:15Panel 3: Improving Epilepsy Surveillance—Lessons from Other Surveillance Systems
Facilitator: Dale Hesdorffer
 1:15-1:20Panel Introductions
 1:20-1:30SEER—Lessons from Cancer Surveillance
Myles Cockburn, University of Southern California Keck School of Medicine
 1:30-1:40Lessons from Autism Surveillance
Marshalyn Yeargin-Allsopp, National Center on Birth Defects and Developmental Disabilities (via phone)
 1:40-1:50Veterans Surveillance Systems
Paul D. Varosy, Department of Veterans Affairs, Eastern Colorado Health Care System
 1:50-2:00Future Opportunities for Use of Existing Data Collection Systems—The Health Maintenance Organization Research Network
Stephen K. Van Den Eeden, Kaiser Permanente Northern California
 2:00-2:30Discussion with the Committee

  • What are the successes and challenges associated with other disease surveillance systems?
  • What are the challenges and opportunities offered by surveys and registries?
  • What lessons have been learned from these systems that could be applied to epilepsy?
  • How can strategies used for surveillance in the military and the veterans health systems be applied to civilian surveillance systems?
2:45Panel 4: Improving Epilepsy Surveillance—Overcoming the Complexities of Data Collection
Facilitator: Joseph Sirven
 2:45-2:50Panel Introductions
 2:50-3:00Defining and Classifying the Epilepsies
Jerome Engel, University of California, Los Angeles, Seizure Disorder Center
 3:00-3:10Comorbidities—Pediatric, Adolescent, and Young Adult Populations
Anne Berg, Northern Illinois University
 3:10-3:20Comorbidities—Adult and Geriatric Populations
Frank Gilliam, Geisinger Health System
 3:20-3:30Emerging Models of Data Collection and Surveillance
Arien Malec, Nationwide Health Information Network
 3:30-4:00Discussion with the Committee

  • How do definitions vary in the epilepsies and how do these variations affect data collection?
  • What are the limitations and barriers associated with current classification systems and how can they be overcome?
  • How do variations in definitions affect data collection and classification?
  • What data need to be gathered to determine how epilepsy interacts with other conditions?
  • How has and how will technology change the way that surveillance is conducted (e.g., EHRs, online data collection, move to cell phones)?
4:00Panel 5: Risk Factors and Prevention
Facilitator: Christi Heck
 4:00-4:05Panel Introductions
 4:05-4:15Measuring and Assessing Risk
W. Allen Hauser, Columbia University Mailman School of Public Health
 4:15-4:25Risk Factors in Pediatric Populations
Shlomo Shinnar, Montefiore Medical Center and the Albert Einstein College of Medicine
 4:25-4:35Strategies for Primary Prevention
Susan Herman, Beth Israel Deaconess Medical Center
 4:35-5:00Discussion with the Committee

  • What is known about the risk factors for developing epilepsy and how can these risk factors be measured?
  • How do risk factors vary across specific subpopulations?
  • How can risk factors be identified for comorbid conditions?
  • How can risk factors be used to inform efforts in prevention?
  • What epidemiologic research or public health studies are needed to inform the development of strategies to prevent epilepsy?
5:00Concluding Remarks
Moderator: Mary Jane England

From: A, Workshop Agendas

Cover of Epilepsy Across the Spectrum
Epilepsy Across the Spectrum: Promoting Health and Understanding.
Institute of Medicine (US) Committee on the Public Health Dimensions of the Epilepsies; England MJ, Liverman CT, Schultz AM, et al., editors.
Washington (DC): National Academies Press (US); 2012.
Copyright © 2012, National Academy of Sciences.

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