The Atlas Project
In 2005 the Atlas of Epilepsy Care in the World was published by WHO with the input of the Global Campaign Against Epilepsy, and as a result of a GCAE project started in 2002. Data were collected from 160 countries covering 97.5% of the world population through a questionnaire developed by a group of experts.
The Atlas: Epilepsy Care in the World is one of the most important projects within the framework of the ILAE/IBE/WHO Global Campaign Against Epilepsy (GCAE) “Out of the Shadows” representing a major collaborative effort involving WHO Headquarters, regional and country offices and ILAE and IBE Headquarters and chapters and members. The Atlas provides an illustrative presentation of data and information on the current situation of epilepsy services and care available from 160 countries or territories, covering 97,5% of the world population.
Not much information exists regarding the resources available within countries to tackle the huge medical, social and economic burden caused by epilepsy. Lack of information about existing resources is a major impediment for policy-makers at local, national and international level for planning appropriate services for epilepsy care. In order to improve the availability of resources in the countries, accurate information about existing resources is crucial. This information is also helpful for health professionals and non-governmental organisations to advocate for more and better resources for epilepsy care.
In order to fill the information gap about the resources available for the care of patients both with mental and neurological disorders, WHO launched the Project “Atlas” in 2000 aimed at collecting, compiling and disseminating information and data on the existing resources and services. The first document in the series was published in 2001 as the Atlas: mental health resources in the world, followed by the Atlas: country resources for neurological disorders in 2004. Because epilepsy care is one of the priority areas of WHO, in order to bridge the information gap in this area, it was decided to expand the Project “Atlas” into the area of epilepsy and to conduct a survey of country resources available for epilepsy care.
The objectives of the project were to:
- Collect, compile, disseminate information on epilepsy resources
- Analyse globally and regionally epilepsy resources data
- Provide baseline for monitoring purposes over time
- Drive global and regional epilepsy programmes
- Make the world more aware of deficiencies in epilepsy resources
- Provide impetus for international efforts to enhance resources
The first step in the development of the Epilepsy Atlas was to identify specific areas where information related to resources and services for epilepsy care was lacking. In order to obtain this information, a questionnaire was developed in consultation with a group of WHO and ILAE/IBE consultants.
The questionnaire was sent to the official delegates of all members of ILAE/IBE. In addition, WHO regional offices were asked to identify a key person working in the field of epilepsy in those countries where an ILAE/IBE liaison person was not available or not responsive.
Countries were grouped into the six WHO regions and four World Bank income categories. The Atlas was finalised and published in 2005. The information in the Epilepsy Atlas is presented in four broad sections;
- the disorder
- the services
- the care providers
- the public health aspects.
The results are presented as global, regional and by income categories within each theme. Selected implications of the findings for further development of resources for epilepsy care are highlighted with each theme. The Epilepsy Atlas also includes brief reviews of selected topics summarizing historical, medical, lifestyle, social and economic issues surrounding people with epilepsy.