Toward an Integrated Public Health Approach for Epilepsy in the 21st Century

Howard K. Koh, MD, MPH; Rosemarie Kobau, MPH; Vicky H. Whittemore, PhD; Marie Y. Mann, MD, MPH; Jennifer G. Johnson, EdD; Joseph D. Hutter, MD; Wanda K. Jones, DrPH


Prev Chronic Dis. 2014;11 

In This Article

Abstract and Introduction


Epilepsy, a complex spectrum of disorders, merits enhanced public health action. In 2012, the Institute of Medicine (IOM) released a seminal report on the public health dimensions of the epilepsies, recommending actions in 7 domains. The report urged a more integrated and coordinated national approach for care centering on the whole patient, including heightened attention to comorbidities and quality of life; more timely referral and access to treatments; and improved community resources, education, stakeholder collaboration, and public communication. The US Department of Health and Human Services responded to this report by accelerating and integrating ongoing initiatives and beginning new ones. This article summarizes recent federally supported activities promoting an integrated public health approach for epilepsy, highlighting progress in response to the landmark 2012 IOM report and identifying opportunities for continued public health action.

Introduction and Background

Despite being recognized for millennia, epilepsy is poorly understood by the public today. Epilepsy represents a complex spectrum of disorders that varies by type, cause, severity, and impact.[1,2] Epilepsy can not only shorten life but also severely compromise overall well-being and full participation in life activities.[1–3] Hence, epilepsy is not just a trying neurological disorder for individuals but also a broader public health challenge for society.[1,4–7] This article summarizes federally supported activities promoting an integrated public health approach for epilepsy, highlighting recent progress in response to the landmark 2012 Institute of Medicine (IOM) report, Epilepsy Across the Spectrum: Promoting Health and Understanding.[2]

Some national efforts previously spurred planning to address epilepsy in the United States. For example, in 1975, the Plan for Nationwide Action on Epilepsy, commissioned by Congress and led by the former Department of Health, Education, and Welfare, identified the burden of epilepsy in the population and released a first set of groundbreaking recommendations to federal and state agencies.[5] Later, 2 national conferences, Living Well with Epilepsy I (1997) and Living Well with Epilepsy II (2003), convened an expanded group of stakeholders to assess progress and gaps for continued public health action[7] Recommendations from these latter initiatives guided some federal agencies and epilepsy stakeholder activities in areas such as surveillance,[2] but broader attention was needed.

To reinvigorate efforts to unify action in the 21st century, 24 organizations, including federal agencies in the US Department of Health and Human Services (HHS) and nonprofit organizations in Vision 20–20 (a group of epilepsy stakeholder organizations), joined together in 2010 to commission the first epilepsy report from the IOM. After receiving input through public meetings across the country and from health professional boards and associations, the IOM created a roadmap for the future. In March 2012, the IOM unveiled its seminal publication Epilepsy Across the Spectrum: Promoting Health and Understanding.[2]

The report emphasized that epilepsy is a common spectrum of disorders that affects not only health but also quality of life for people of all ages; that a more coordinated approach is needed for care centering on the whole patient; that although effective treatments are available, timely referral and access to treatments fall short; and that it is an area filled with complexity and stigma. To address these and other challenges, the IOM recommended actions for a wide range of stakeholders in 7 domains (Table).[2]

For HHS, the IOM report served as a catalyst for accelerating projects under way, launching new ones, and integrating departmental efforts.[2,7] In 2 years since the report was released, HHS agencies have implemented numerous recommendations, often in collaboration with community partners and also by building on initiatives in the Affordable Care Act (ACA). This article documents these HHS efforts; of the 7 domains for which the IOM recommended actions, HHS has bolstered efforts in the first 5 domains, and in the remaining two has furthered partnerships with the voluntary, nongovernmental sector (through grants, contracts, or memoranda of understanding). The Table summarizes selected HHS activities, and we provide more information by domain below.