Epilepsy Across the Spectrum: Promoting Health and Understanding (2012)

Chapter: Appendix A: Workshop Agendas

Previous Chapter: 9 Next Steps and Recommendations
Suggested Citation: "Appendix A: Workshop Agendas." Institute of Medicine. 2012. Epilepsy Across the Spectrum: Promoting Health and Understanding. Washington, DC: The National Academies Press. doi: 10.17226/13379.

A

Workshop Agendas

WORKSHOP ON PUBLIC HEALTH SURVEILLANCE,1
POPULATION HEALTH RESEARCH, AND DATA
COLLECTION FOR THE EPILEPSIES

March 21, 2011

The Beverly Hilton
9876 Wilshire Boulevard
Beverly Hills, California

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.

_______________

1 Surveillance is defined broadly as continuous and methodical data collection and analysis for public health programs, including registries and disease-specific reporting systems, surveys, and administrative and clinical data sets.

Suggested Citation: "Appendix A: Workshop Agendas." Institute of Medicine. 2012. Epilepsy Across the Spectrum: Promoting Health and Understanding. Washington, DC: The National Academies Press. doi: 10.17226/13379.
Suggested Citation: "Appendix A: Workshop Agendas." Institute of Medicine. 2012. Epilepsy Across the Spectrum: Promoting Health and Understanding. Washington, DC: The National Academies Press. doi: 10.17226/13379.
 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?
11:00Break
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
Suggested Citation: "Appendix A: Workshop Agendas." Institute of Medicine. 2012. Epilepsy Across the Spectrum: Promoting Health and Understanding. Washington, DC: The National Academies Press. doi: 10.17226/13379.
Suggested Citation: "Appendix A: Workshop Agendas." Institute of Medicine. 2012. Epilepsy Across the Spectrum: Promoting Health and Understanding. Washington, DC: The National Academies Press. doi: 10.17226/13379.
 Questions:
 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?
2:30Break
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
 Questions:
 • 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)?
Suggested Citation: "Appendix A: Workshop Agendas." Institute of Medicine. 2012. Epilepsy Across the Spectrum: Promoting Health and Understanding. Washington, DC: The National Academies Press. doi: 10.17226/13379.
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
Suggested Citation: "Appendix A: Workshop Agendas." Institute of Medicine. 2012. Epilepsy Across the Spectrum: Promoting Health and Understanding. Washington, DC: The National Academies Press. doi: 10.17226/13379.
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?
Suggested Citation: "Appendix A: Workshop Agendas." Institute of Medicine. 2012. Epilepsy Across the Spectrum: Promoting Health and Understanding. Washington, DC: The National Academies Press. doi: 10.17226/13379.
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?
Suggested Citation: "Appendix A: Workshop Agendas." Institute of Medicine. 2012. Epilepsy Across the Spectrum: Promoting Health and Understanding. Washington, DC: The National Academies Press. doi: 10.17226/13379.
 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
Suggested Citation: "Appendix A: Workshop Agendas." Institute of Medicine. 2012. Epilepsy Across the Spectrum: Promoting Health and Understanding. Washington, DC: The National Academies Press. doi: 10.17226/13379.
 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?
Suggested Citation: "Appendix A: Workshop Agendas." Institute of Medicine. 2012. Epilepsy Across the Spectrum: Promoting Health and Understanding. Washington, DC: The National Academies Press. doi: 10.17226/13379.
Suggested Citation: "Appendix A: Workshop Agendas." Institute of Medicine. 2012. Epilepsy Across the Spectrum: Promoting Health and Understanding. Washington, DC: The National Academies Press. doi: 10.17226/13379.
9:35-9:45Independent Living Resources and Services
Rebecca Rubin, Jewish Foundation for Group Homes
9:45-9:55Other Community Resources
Patricia Gibson, Wake Forest University
9:55-10:25Committee Questions and Discussion
10:25-10:30Concluding Remarks and Panel Summary
 Questions:
 What mental health services and resources (including psychosocial and mood issues) are available for people with epilepsy and their caregivers? What services exist for people with psychogenic seizures?
 • What school-based services and resources (e.g.,
individualized education programs) exist for children and young adults with epilepsy to address cognitive and developmental issues, including learning and behavioral problems? How are program employees educated about epilepsy?
 • What vocational and employment services and
resources exist for people with epilepsy? What exists for young adults transitioning from school to the workforce? How are cognitive problems related to employment handled? How are employers educated about epilepsy?
 • What resources and services exist to support
independent living for people with epilepsy? How are cognitive and geriatric issues handled?
 • What general community resources and services currently exist for people with epilepsy? What opportunities exist to support the participation of people with epilepsy in society? What programs exist specifically for children and young adults? For seniors? For other specific populations?
 • How successful are these programs? What is known about the impact of these programs on the quality of life of people with epilepsy and their families?
 • What are the gaps and opportunities for improvement?
 • What are your priority recommendations for
improving community programs to better meet the needs of people with epilepsy?
10:30Break
Suggested Citation: "Appendix A: Workshop Agendas." Institute of Medicine. 2012. Epilepsy Across the Spectrum: Promoting Health and Understanding. Washington, DC: The National Academies Press. doi: 10.17226/13379.
10:45Panel 7: Beyond Stigma: Public Education and Awareness Campaigns
Facilitator: Vicki Beck
10:45-10:50Panel Introductions
10:50-11:00Epilepsy Education and Awareness Campaigns: Successes,
Challenges and Next Steps to Reduce Stigma Sandy Finucane, Epilepsy Foundation
11:00-11:10Global Mental Health Programs: Progress, Lessons
Learned, and Recommendations to Reduce Stigma Bernice A. Pescosolido, Indiana University
11:10-11:20Social Marketing Campaigns: Impact on Mental Health
Stigma Chris Marshall, Substance Abuse and Mental Health
Administration
11:20-11:30Advocacy Efforts to Reduce Mental Health Stigma Robert Carolla, National Alliance on Mental Illness
11:30-11:40Leveraging Media to Reduce Stigma: Broadcast, Print,
Internet, and User-Generated Sites Otto Wahl, University of Hartford
11:40-12:10Committee Questions and Discussion
12:10-12:15Concluding Remarks and Panel Summary
 Questions:
 Please describe public education and awareness campaigns with which your organization has been involved. What were the outcomes of the campaign and how was success measured?
 • How can public education and awareness campaigns be used to increase knowledge and understanding about the epilepsies, change attitudes and perceptions, and reduce stigma?
 • What are the key components and best practices that are required to develop a successful public education and awareness campaign?
 • How can online tools and social media effectively be used for public education and awareness campaigns?
 • What are the challenges and barriers for developing a successful public education and awareness campaign for the epilepsies?
Suggested Citation: "Appendix A: Workshop Agendas." Institute of Medicine. 2012. Epilepsy Across the Spectrum: Promoting Health and Understanding. Washington, DC: The National Academies Press. doi: 10.17226/13379.
Suggested Citation: "Appendix A: Workshop Agendas." Institute of Medicine. 2012. Epilepsy Across the Spectrum: Promoting Health and Understanding. Washington, DC: The National Academies Press. doi: 10.17226/13379.
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Suggested Citation: "Appendix A: Workshop Agendas." Institute of Medicine. 2012. Epilepsy Across the Spectrum: Promoting Health and Understanding. Washington, DC: The National Academies Press. doi: 10.17226/13379.
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Suggested Citation: "Appendix A: Workshop Agendas." Institute of Medicine. 2012. Epilepsy Across the Spectrum: Promoting Health and Understanding. Washington, DC: The National Academies Press. doi: 10.17226/13379.
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Next Chapter: Appendix B: IOM Data-Gathering Effort
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