- Develop a central, easily navigated website (“clearing house”) that provides direct links to websites containing current, accurate epilepsy-related information for individuals and their families. This centralized resource should be comprehensive; it should include concise, easy-to-understand descriptions of the information available on the linked websites and up-to-date contact information for epilepsy organizations; and it should be widely disseminated to health care providers and people with epilepsy and their families.
- Ensure that educational resources are up to date, are effective, and reflect the latest scientific understanding of the epilepsies and their associated comorbidities and consequences.
- Engage a wide and diverse spectrum of people with epilepsy and their families in the development of online educational resources to ensure that the content meets the specific needs of target audiences at the outset.
- Support the development, evaluation, replication, and expanded use of self-management and educational programs, including those developed through the Managing Epilepsy Well Network.
- Engage state and local Epilepsy Foundation affiliates, epilepsy centers, and health care systems and providers to expand the dissemination of available educational resources and self-management tools to people with epilepsy and their families.
- Explore the development of a formal, standardized certificate program for epilepsy health educators.
Public Awareness and Knowledge
While some surveys have suggested that attitudes regarding epilepsy have become less negative over time, it is not certain how contemporary attitudes compare and whether overall improvements in attitudes have affected behavior. Compelling testimony from families dealing with epilepsy and research on employment suggest that problems of stigma remain widespread. Efforts to increase public awareness and knowledge are motivated by the expectation that information that reduces misconceptions and misinformation will improve attitudes and, ultimately, behavior toward people with epilepsy and thereby reduce stigma. Stigma, whether felt or overtly experienced, has many negative consequences for both health and quality of life, and overcoming it is an important goal for the field.
For the public in general, the news and entertainment media are significant