More epilepsy surveillance data is needed in order to improve quality of life for people with the condition, the Institute of Medicine suggests.
On March 30, 2012, the Institute of Medicine published a consensus report titled Epilepsy Across the Spectrum: Promoting Health and Understanding
. Epilepsy is the fourth most common neurological disorder in the United States. According to the report’s authors, public health officials and policy makers interested in improving care for people with epilepsy have been “flying blind” due to the lack of sufficient epilepsy surveillance data. The report examines epilepsy’s public health dimensions through 4 topic areas:
Public health surveillance, collection, and data integration
Population and public health research
Health policy, health care, and human services; and
Patient, provider, and public education
The authors make 12 recommendations geared toward improving quality of life for epilepsy patients. Two are somewhat global, and highlight the tremendous need:
More data on epilepsy is needed to provide better information about many aspects of the disease, including risk factors, associated health conditions, prevention efforts, and community needs. Due to gaps in knowledge, programs struggle with prevention and epilepsy’s effects.
The accessibility, quality, and value of health care for epileptics must be improved. For instance, the authors cite disparities in access to care for rural and underserved patients. They also recommend that community programs and services be expanded to help not only patients, but their loved ones as well.
To read more of the authors’ recommendations, visit www.iom.edu/epilepsy
Ms. Wick is a visiting professor at the University of Connecticut School of Pharmacy and a freelance writer from Virginia.