Institute of Medicine Study
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Institute of Medicine (IOM) Committee on Public Health Dimensions of the Epilepsies
Update: The IOM will hold a public briefing to discuss the study results. Please see the "Results" section below for more information.
Overview
The IOM committee was established at the request of the Department of Health and Human Services Office of the Assistant Secretary for Planning and Evaluation, the National Institutes of Health, and Vision 20/20. This ad hoc committee will recommend priorities in public health, healthcare and human services, and health literacy and public awareness for the epilepsies and to propose strategies to address these priorities. The Epilepsy Foundation is a sponsor of the study and also a member of Vision 20/20, a coalition of epilepsy organizations. The committee will focus its study on the following four topic areas:
1. Public Health Surveillance, Collection and Data Integration: Examine how existing or new surveillance systems could support a more accurate assessment of the public health burden of the epilepsies for patients and their families.
2. Population and Public Health Research: Identify what research questions or areas of focus should be priorities for future epidemiological and population health studies on the epilepsies that may inform the development of interventions or preventative strategies.
3. Health Policy, Healthcare and Human Services: Identify what constitutes adequate care and access to health and human services for people with epilepsy; what can be done to improve the consistency and quality of care for persons with epilepsy; what gaps and needs for improvement exist. Discussion is needed on maximizing community inclusion and personal outcomes for persons with epilepsies (e.g., changes in public health and services policies and practices or community and family-based support programs).
4. Patient, Provider, and Public Education: Define what needs exist to improve the education and training of health and other professionals who treat or support persons with epilepsy. Additionally, explore how public education and awareness campaigns could best be used to increase patient and public literacy, reduce stigma, and improve community support and participation for people with epilepsy.
Patient Advocacy Working Group
The Patient Advocacy Working Group is a group of epilepsy organizations which includes the Epilepsy Foundation (EFA), American Epilepsy Society (AES), Anita Kaufmann Foundation, Citizens United for Research in Epilepsy (CURE), International Dravet Syndrome Epilepsy Action (IDEA) League, LGS (Lennox-Gastaut Syndrome) Foundation and Seizure Tracker.
The Working Group prepared a joint statement which was presented by Denise Pease (EFA) at the first meeting of the committee on January 10, 2011 in Washington, DC. Denise also presented her own personal testimony at the meeting.
"Funding for research into improved treatments and cures for epilepsy is desperately needed because while some epilepsies are manageable, some forms of epilepsy (largely those that begin in childhood) are life-threatening and result in patients and their families coping with a lifetime of costly care. Funding should reflect the prevalence, lifespan burden, and direct and indirect costs associated with the disorder including loss or lack of employment and social standing." – excerpt from the Patient Advocacy Working Group statement
"While each person's experience with epilepsy is unique, I am honored to have the opportunity to tell you about what I, as a person living with epilepsy, and as a representative of the over 2 million Americans who live with epilepsy, see to be the many aspects of epilepsy that need to be addressed. Epilepsy is the most common neurological disorder affecting all age groups, yet the public is largely unaware that it is a serious problem with severe consequences for the people who have it, and their families. Much of the public does not know that epilepsy has the potential to damage the brain and end a life, and that there is a wide spectrum of epilepsy disorders." – excerpt from Denise Pease's testimony
Results
Update on 4/16:
The IOM Committee published the report following a public briefing from 10:00-11:00 a.m. (EDT) on March 30 in Washington, D.C., at the Keck Center, 500 Fifth St. NW, Washington, D.C. 20001. We are eager to use the study results to improve the lives of all people living with epilepsy!
The next day, on Saturday March 31st, one of the IOM committee members, Dr. Joan Austin, attended our National Walk for Epilepsy in Washington, DC to speak in our Ask the Experts panel. She presented an overview of the IOM results to Walk participants. Also speaking in the panel was Dr. Joseph Sirven and Dr. Brien Smith. The Ask the Experts panel was free to registered Walk participants.
Epilepsy Community Responds to the Institute of Medicine Report on the Epilepsies
Patient Advocacy Groups Meet Institute of Medicine Report on Epilepsy with Increased Commitment
IOM Epilepsy Report Brief March 2012
