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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 8:45 Public 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 Surveillanceis 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. 445
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446 EPILEPSY ACROSS THE SPECTRUM 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 9:30 Panel 1: The Impact of Epilepsy on Patients, Families, the Health Care System, and Society Facilitator: Charles Begley 9:30-9:40 Panel Introductions 9:40-9:50 Direct Costs—Diagnosis and Treatment David R. Lairson, University of Texas Health Science Center at Houston 9:50-10:00 Indirect Costs—Academic Achievement, Employment, and Productivity John Langfitt, University of Rochester Medical Center 10:00-10:10 Quality of Life Gus Baker, University of Liverpool and the Walton Centre for Neurology and Neurosurgery (via phone) 10:10-10:20 Impact Across Populations—Health Disparities and Considerations for Subpopulations Samuel Wiebe, Hotchkiss Brain Institute at the University of Calgary Medicine 10:20-11:00 Discussion with the Committee Questions: • 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?
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447 APPENDIX A • 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? 11:00 Break 11:15 Panel 2: Epilepsy Surveillance—Gaps and Opportunities Facilitator: David Grant 11:15-11:20 Panel Introductions 11:20-11:30 Current State of Epilepsy Surveillance Edwin Trevathan, St. Louis University School of Public Health 11:30-11:40 Building on Existing Public Health Surveillance Systems Wayne H. Giles, National Center for Chronic Disease Prevention and Health Promotion 11:40-11:50 Lessons from the Development of a Canadian National System of Surveillance Nathalie Jetté, University of Calgary Medicine 11:50-12:00 Challenges and Opportunities for Surveillance—The Patient and Family Perspective Mary Macleish, Epilepsy Foundation of Arizona
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448 EPILEPSY ACROSS THE SPECTRUM 12:00-12:30 Discussion with the Committee Questions: • 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 1:15 Panel 3: Improving Epilepsy Surveillance—Lessons from Other Surveillance Systems Facilitator: Dale Hesdorffer 1:15-1:20 Panel Introductions 1:20-1:30 SEER—Lessons from Cancer Surveillance Myles Cockburn, University of Southern California Keck School of Medicine 1:30-1:40 Lessons from Autism Surveillance Marshalyn Yeargin-Allsopp, National Center on Birth Defects and Developmental Disabilities (via phone) 1:40-1:50 Veterans Surveillance Systems Paul D. Varosy, Department of Veterans Affairs, Eastern Colorado Health Care System 1:50-2:00 Future Opportunities for Use of Existing Data Collection Systems—The Health Maintenance Organization Research Network Stephen K. Van Den Eeden, Kaiser Permanente Northern California 2:00-2:30 Discussion with the Committee
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449 APPENDIX A 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? 2:30 Break 2:45 Panel 4: Improving Epilepsy Surveillance—Overcoming the Complexities of Data Collection Facilitator: Joseph Sirven 2:45-2:50 Panel Introductions 2:50-3:00 Defining and Classifying the Epilepsies Jerome Engel, University of California, Los Angeles, Seizure Disorder Center 3:00-3:10 Comorbidities—Pediatric, Adolescent, and Young Adult Populations Anne Berg, Northern Illinois University 3:10-3:20 Comorbidities—Adult and Geriatric Populations Frank Gilliam, Geisinger Health System 3:20-3:30 Emerging Models of Data Collection and Surveillance Arien Malec, Nationwide Health Information Network 3:30-4:00 Discussion 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)?
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450 EPILEPSY ACROSS THE SPECTRUM 4:00 Panel 5: Risk Factors and Prevention Facilitator: Christi Heck 4:00-4:05 Panel Introductions 4:05-4:15 Measuring and Assessing Risk W. Allen Hauser, Columbia University Mailman School of Public Health 4:15-4:25 Risk Factors in Pediatric Populations Shlomo Shinnar, Montefiore Medical Center and the Albert Einstein College of Medicine 4:25-4:35 Strategies for Primary Prevention Susan Herman, Beth Israel Deaconess Medical Center 4:35-5:00 Discussion with the Committee Questions: • 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? 5:00 Concluding Remarks Moderator: Mary Jane England 5:15 Adjourn
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451 APPENDIX A WORKSHOP ON THE PUBLIC HEALTH DIMENSIONS OF THE EPILEPSIES: HEALTH CARE QUALITY AND ACCESS AND EDUCATION OF PATIENTS, FAMILIES, AND PROVIDERS June 28-29, 2011 Keck Center 500 Fifth Street, NW Room 100 Washington, DC June 28: OPEN SESSION 8:15 a.m. Welcome and Opening Remarks Mary Jane England, Committee Chair 8:30 Public 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 9:00 Panel 1: Systems and Pathways of Health Care for the Epilepsies: Existing Models and Opportunities for Improvement Facilitators: Patricia Osborne Shafer and Paul Jarris 9:00-9:05 Panel Introductions 9:05-9:15 The Patient Perspective Warren Lammert, Epilepsy Therapy Project 9:15-9:25 Epilepsy Centers Robert J. Gumnit, National Association of Epilepsy Centers 9:25-9:35 Department of Veterans Affairs (VA) Epilepsy Centers of Excellence Karen Parko, San Francisco VA Medical Center
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452 EPILEPSY ACROSS THE SPECTRUM 9:35-9:45 UK System: Lessons Learned Helen Cross, Great Ormond Street Hospital for Children (via phone) 9:45-9:55 Clinical Pathways: Health System Perspective David Nerenz, Henry Ford Health System 9:55-10:25 Committee Questions and Discussion 10:25-10:30 Concluding 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? 10:30 Break 10:45 Panel 2: Health Care for the Epilepsies: Quality of Care Facilitators: Ramon Diaz-Arrastia and Carolyn Cocotas
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453 APPENDIX A 10:45-10:50 Panel Introductions 10:50-11:00 Treatment Guidelines and Comparative Effectiveness Research Jacqueline French, New York University 11:00-11:10 Medication Issues: Brand Versus Generic Seizure Medications Michel Berg, University of Rochester 11:10-11:20 Lessons 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) 11:20-11:30 New Models in Health Care Services Delivery and Reimbursement Benjamin Druss, Emory University 11:30-12:10 Committee Questions and Discussion 12:10-12:15 Concluding 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?
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454 EPILEPSY ACROSS THE SPECTRUM 12:15 p.m. Lunch 1:00 Panel 3: Health Care for the Epilepsies: Access and Barriers Facilitators: Sandra Cushner-Weinstein and Lionel Carmant 1:00-1:05 Panel Introductions 1:05-1:15 Overcoming Disparities in Access to Care for Underserved Populations Jorge Burneo, University of Western Ontario 1:15-1:25 Barriers to Access Charles Onufer, University of Illinois at Chicago (retired) 1:25-1:35 Lessons Learned from the Epilepsy Learning Collaborative Deanna McPherson, Health Resources and Services Administration 1:35-1:45 Care Coordination: Improving Transitions and Coordination Between Health Care Providers and Intersections with Community Services Diane Carter, University of Virginia, Care Coordination for Children 1:45-1:55 Innovative Approaches to Improving Access to Care Jeanette Hartshorn, Telemedicine Epilepsy Management Program of Texas 1:55-2:25 Committee Questions and Discussion 2:25-2:30 Concluding 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?
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455 APPENDIX A • 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? 2:30 Break 2:45 Panel 4: Education of Health Care Professionals Facilitator: Gregory Holmes 2:45-2:50 Panel Introductions 2:50-3:00 Educating Neurologists and Epileptologists David Labiner, University of Arizona 3:00-3:10 Educating Primary Care Providers Paul Levisohn, University of Colorado 3:10-3:20 Nursing Education Janice Buelow, University of Indiana 3:20-3:30 Psychiatry Deborah Hales, American Psychiatric Association 3:30-3:40 Geriatrics Ilo Leppik, University of Minnesota 3:40-4:10 Committee Questions and Discussion 4:10-4:15 Concluding 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
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456 EPILEPSY ACROSS THE SPECTRUM 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? 4:15 Panel 5: Education of Patients and Families Facilitators: Joan Austin 4:15-4:20 Panel Introductions 4:20-4:30 Successful Patient and Family Education Kate Lorig, Stanford University (via phone) 4:30-4:40 Educating Patients in Health Care Settings Mimi Callanan, Stanford University 4:40-4:50 Education for Self-Management Colleen DiIorio, Emory University (via phone) 4:50-5:00 Ensuring Health Literacy and Cultural Appropriateness Cheryl Bettigole, Philadelphia Department of Public Health 5:00-5:10 The Role of Technology in Educating Patients and Families Michael Wolf, Northwestern University 5:10-5:40 Committee Questions and Discussion 5:40-5:45 Concluding 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?
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457 APPENDIX A • 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? 5:45 Adjourn June 29: OPEN SESSION 8:15 a.m. Welcoming Remarks Mary Jane England, Committee Chair 8:30 Public Testimony Moderator: Mary Jane England • John Pellock, American Epilepsy Society • Robert Moss, SeizureTracker.com • Richard Leslie, Wyoming Epilepsy Association • Mary Jo Pugh, Veterans Health Administration • John Gambo • Michael Bornemann • Sabrina Cooke 9:00 Panel 6: Improving Quality of Life: Community Programs and Resources Facilitator: Dilip Jeste 9:00-9:05 Panel Introductions 9:05-9:15 Mental Health Services and Resources Across the Lifespan Naomi Chaytor, University of Washington (via phone) 9:15-9:25 School-Based Services and Resources Bruce Hermann, University of Wisconsin 9:25-9:35 Vocational and Employment Services and Resources Robert T. Fraser, University of Washington (via phone)
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458 EPILEPSY ACROSS THE SPECTRUM 9:35-9:45 Independent Living Resources and Services Rebecca Rubin, Jewish Foundation for Group Homes 9:45-9:55 Other Community Resources Patricia Gibson, Wake Forest University 9:55-10:25 Committee Questions and Discussion 10:25-10:30 Concluding 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? 10:30 Break
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459 APPENDIX A 10:45 Panel 7: Beyond Stigma: Public Education and Awareness Campaigns Facilitator: Vicki Beck 10:45-10:50 Panel Introductions 10:50-11:00 Epilepsy Education and Awareness Campaigns: Successes, Challenges and Next Steps to Reduce Stigma Sandy Finucane, Epilepsy Foundation 11:00-11:10 Global Mental Health Programs: Progress, Lessons Learned, and Recommendations to Reduce Stigma Bernice A. Pescosolido, Indiana University 11:10-11:20 Social Marketing Campaigns: Impact on Mental Health Stigma Chris Marshall, Substance Abuse and Mental Health Administration 11:20-11:30 Advocacy Efforts to Reduce Mental Health Stigma Robert Carolla, National Alliance on Mental Illness 11:30-11:40 Leveraging Media to Reduce Stigma: Broadcast, Print, Internet, and User-Generated Sites Otto Wahl, University of Hartford 11:40-12:10 Committee Questions and Discussion 12:10-12:15 Concluding 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? • What is the role of the media in educating the public and how can this role be leveraged to better educate the public about the epilepsies?
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460 EPILEPSY ACROSS THE SPECTRUM • What are your priority recommendations for improving the education of the public about the epilepsies? 12:15 p.m. Closing Remarks Mary Jane England, Committee Chair 12:30 Adjourn