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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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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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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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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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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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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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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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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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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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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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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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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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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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• 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
