8:15 a.m.Welcome and Opening Remarks
Mary Jane England, Committee Chair
8:30Public Testimony
Moderator: Mary Jane England
  • Brandy Parker
  • Ilene Miller, Hope for Hypothalamic Hamartomas
  • Carmita Vaughan, CURE
  • Steve Wulchin
  • Cheryl Ann Tubby, American Epilepsy Society
  • Mark Brooks, Abilities Network-Epilepsy Support Group
  • Mylissa Daniels
  • Kevin Malone, Epilepsy Therapy Project
  • Melinda Heine
9:00Panel 1: Systems and Pathways of Health Care for the Epilepsies: Existing Models and Opportunities for Improvement
Facilitators: Patricia Osborne Shafer and Paul Jarris
 9:00-9:05Panel Introductions
 9:05-9:15The Patient Perspective
Warren Lammert, Epilepsy Therapy Project
 9:15-9:25Epilepsy Centers
Robert J. Gumnit, National Association of Epilepsy Centers
 9:25-9:35Department of Veterans Affairs (VA) Epilepsy Centers of Excellence
Karen Parko, San Francisco VA Medical Center
 9:35-9:45UK System: Lessons Learned
Helen Cross, Great Ormond Street Hospital for Children (via phone)
 9:45-9:55Clinical Pathways: Health System Perspective
David Nerenz, Henry Ford Health System
 9:55-10:25Committee Questions and Discussion
 10:25-10:30Concluding Remarks and Panel Summary

Questions:
  • What experiences do people with epilepsy and their families have when entering and moving through the health system? What challenges do they confront, and how are they overcome?
  • What are the current pathways and models of care for people with epilepsy in your health system? What are the current models of care for specific populations with epilepsy, including children, women, older adults, and racial and ethnic minorities?
  • How do people with epilepsy move through your health system? What is known about the time to treatment and referral for people with epilepsy in your health system?
  • How is care coordinated for people with epilepsy? What is the role of epilepsy specialists in your health system?
  • How do you measure quality of care in your health systems? What strategies do you use to ensure access to care in your system?
  • What is known about health outcomes for people with epilepsy treated in your health system?
  • What international models of care for people with epilepsy have lessons learned that could be applied to the United States?
  • What are your priority recommendations for improving systems of care to better meet the needs of people with epilepsy?
10:30Break
10:45Panel 2: Health Care for the Epilepsies: Quality of Care
Facilitators: Ramon Diaz-Arrastia and Carolyn Cocotas
 10:45-10:50Panel Introductions
 10:50-11:00Treatment Guidelines and Comparative Effectiveness Research
Jacqueline French, New York University
 11:00-11:10Medication Issues: Brand Versus Generic Seizure Medications
Michel Berg, University of Rochester
 11:10-11:20Lessons Learned from the Implementation of Performance Measures and Centers of Excellence for the Care of Stroke Patients
Marilyn Rymer, Saint Luke's Brain and Stroke Institute (via phone)
 11:20-11:30New Models in Health Care Services Delivery and Reimbursement
Benjamin Druss, Emory University
 11:30-12:10Committee Questions and Discussion
 12:10-12:15Concluding Remarks and Panel Summary

Questions:
  • What further efforts are needed on epilepsy treatment guidelines and parameters for care? How are treatment guidelines evaluated? What comparative effectiveness research exists for best practices?
  • How are performance measures endorsed and instituted?
  • What is known about the efficacy of brand versus generic seizure medications? How does this impact access to medications?
  • How do reimbursement issues impact access to care?
  • How could health care reform affect the access to and quality of care for people with epilepsy?
  • What innovative approaches are needed to improve health care?
  • What is the future for models of care in light of the 2010 Patient Protection and Affordable Care Act?
  • In your perspective, what makes up appropriate care for people with epilepsy in regards to services and personnel?
  • What are your priority recommendations for improving quality of care and access to care for people with epilepsy?
12:15 p.m.Lunch
1:00Panel 3: Health Care for the Epilepsies: Access and Barriers
Facilitators: Sandra Cushner-Weinstein and Lionel Carmant
 1:00-1:05Panel Introductions
 1:05-1:15Overcoming Disparities in Access to Care for Underserved Populations
Jorge Burneo, University of Western Ontario
 1:15-1:25Barriers to Access
Charles Onufer, University of Illinois at Chicago (retired)
 1:25-1:35Lessons Learned from the Epilepsy Learning Collaborative
Deanna McPherson, Health Resources and Services Administration
 1:35-1:45Care Coordination: Improving Transitions and Coordination Between Health Care Providers and Intersections with Community Services
Diane Carter, University of Virginia, Care Coordination for Children
 1:45-1:55Innovative Approaches to Improving Access to Care
Jeanette Hartshorn, Telemedicine Epilepsy Management Program of Texas
 1:55-2:25Committee Questions and Discussion
 2:25-2:30Concluding Remarks and Panel Summary

Questions:
  • What are the barriers to access and care across populations? For specific populations? What disparities in care exist currently?
  • What lessons have been learned about improving access and eliminating disparities? What are possible solutions to overcome these barriers?
  • What is known about whether the current workforce is adequate to provide quality health care for people with epilepsy?
  • How might changes in technology (e.g., telemedicine) impact access to care?
  • What successful models exist for integrating the care of risk factors, comorbidities, and sequelae in people with epilepsy?
  • What needs to be done to improve care coordination encompassing health care, mental health care, education, employment, and other services? What are your priority recommendations for improving access to care and reducing health disparities for people with epilepsy?
2:30Break
2:45Panel 4: Education of Health Care Professionals
Facilitator: Gregory Holmes
 2:45-2:50Panel Introductions
 2:50-3:00Educating Neurologists and Epileptologists
David Labiner, University of Arizona
 3:00-3:10Educating Primary Care Providers
Paul Levisohn, University of Colorado
 3:10-3:20Nursing Education
Janice Buelow, University of Indiana
 3:20-3:30Psychiatry
Deborah Hales, American Psychiatric Association
 3:30-3:40Geriatrics
Ilo Leppik, University of Minnesota
 3:40-4:10Committee Questions and Discussion
 4:10-4:15Concluding Remarks and Panel Summary

Questions:
  • What are the current approaches being used to educate and test knowledge and competence of health professionals about the epilepsies?
  • Are there core competencies and/or curricula currently available that focus on the epilepsies?
  • How much time is devoted to teaching information relevant to the epilepsies? At what level of detail is the information taught?
  • What role does continuing education play in educating health professionals about the epilepsies?
  • How could technology be used to expand and improve education opportunities and provide decision support for health professionals who work with people with epilepsy?
  • What are the best strategies for educating health professionals about clear communication and effective interactions with patients who have epilepsy?
  • What are the barriers and challenges to improving education of health professionals about the epilepsies? How can these barriers be overcome?
  • What are your priority recommendations for improving the education of health professionals about the epilepsies?
4:15Panel 5: Education of Patients and Families
Facilitators: Joan Austin
 4:15-4:20Panel Introductions
 4:20-4:30Successful Patient and Family Education
Kate Lorig, Stanford University (via phone)
 4:30-4:40Educating Patients in Health Care Settings
Mimi Callanan, Stanford University
 4:40-4:50Education for Self-Management
Colleen DiIorio, Emory University (via phone)
 4:50-5:00Ensuring Health Literacy and Cultural Appropriateness
Cheryl Bettigole, Philadelphia Department of Public Health
 5:00-5:10The Role of Technology in Educating Patients and Families
Michael Wolf, Northwestern University
 5:10-5:40Committee Questions and Discussion
 5:40-5:45Concluding Remarks and Panel Summary

Questions:
  • What are the health care (psychosocial as well as medical) education needs of patients? Of families? Where are the gaps in knowledge? How can interventions be aimed at these gaps?
  • What are the critical junctures for educating patients and families about the epilepsies?
  • How can successful education efforts improve self-management?
  • What are the roles of health care providers, foundations and organizations, and community programs in ensuring that patients and families are well educated and informed about the epilepsies?
  • What are the key components and best practices required for developing successful patient and family education programs?
  • What are the challenges and barriers for developing successful patient and family education interventions and programs?
  • How can new technology, online resources, and social media tools effectively be used to improve patient and family education?
  • What are the best strategies for ensuring that education interventions are targeted appropriately in terms of health literacy and cultural sensitivity?
  • What are your priority recommendations for improving the education of patient and families about the epilepsies?
5:45Adjourn

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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