J Epilepsy 1988;1:215--216 © 1988 Demos Publications

EFA Commentary

The Epilepsy Foundation of America's National Epilepsy Library (NEL) was established in 1982. Its function is to identify, collect, and disseminate the latest research findings, program practices, and other developments affecting people with epilepsy and their families. Its ultimate goal is to improve the treatment and quality of life of people with epilepsy.

The need for a library of this kind was noted by the Commission for the Control of Epilepsy and Its Con- sequences. In its report to Congress in 1977, the Commission identified an alarming gap between the results of scientific inquiry and the dissemination of those results to practitioners in the field. The Com- mission therefore recommended the establishment of a center that would serve as an active clearing- house to collect all available public information materials on epilepsy and develop and make avail- able additional educational materials according to need.

The NEL was established specifically to collect and disseminate information about both the medical and psychosocial aspects of epilepsy to physicians and other health care professionals. The developments in the understanding and management of epilepsy require mechanisms for prompt transfer and dissem- ination of this information to practitioners in the field, which is part of the mission of the Epilepsy Foun- dation of America.

The NEL has developed and maintains a compre- hensive collection of texts, symposia, reports, and other works relevant to the medical and psychosocial aspects of epilepsy. (It does not collect information about basic or experimental research. This material is collected by the National Institutes of Health and uni- versity libraries and is available through other data- bases.) The NELreceives over 125 journals and main- tains a database of close to 4,000 articles. In addition, the librarians regularly use the Medline and Excerpta Medica databases and have access to many more. The NEL is staffed by three professional librarians who provide customized reference services using in- house and commercial databases, the library col- lection, and reference files.

The Foundation's librarians serve as interpreters between the requester and the literature; when a re-

quest is made, they consider the requester's back- ground and respond accordingly. Most requests are answered with a bibliography compiled from the in- house database and relevant excerpts from books. Copies of one or two key articles listed in the bibliog- raphy are often sent. Responses are coordinated with other EFA departments when appropriate. The in- formation and referral, legal advocacy, and public information and education staff are often called upon to supplement a response, particularly when the requester is not a health care professional. If the answer to a request cannot be found in the NEL, the librarians will direct the requester to a more appro- priate source.

Because it can be difficult for non-neurologists to find the books and journals cited in literature searches, the NEL sees document delivery as a core service. Great care is taken to obtain permission from pub- lishers to make photocopies of articles. The NELpar- ticipates in the Copyright Clearance Center, Inc., an intermediary organization that facilitates the pay- ment of royalties for photocopied materials to pub- lishers. NEL absorbs the costs for this service.

In addition to its library services, the NEL provides two other vital information services. Through its Ex- hibit Program, the NEL sends exhibits to the annual conferences of 15-20 health-related organizations every year. Conference attendees have the opportun- ity to review Foundation publications, ask questions about epilepsy and Foundation services, and receive a packet of sample professional and/or public educa- tion materials.

The second program, DATALINK, is a computer service which links the Foundation's affiliates to NEL's in-house database, as well as to the resource flies maintained by the Information and Referral and Legal Advocacy Departments of the Foundation. Af- filiates with access to DATALINK perform online searches and have access to "Monthly Update," a list- ing of citations of all monographs and journal articles obtained by the NEL during the previous month. The information and referral resource file contains infor- mation on clinical and other services available to people in the local community; the legal advocacy file contains state laws pertaining to epilepsy.

J EPILEPSY, VOL 1, NO. 4, 1988 215

COMMENTARY

In summary, the Foundation's National Epilepsy Library offers several advantages over other medical libraries and commercial databases as a source for epilepsy information. Because its perspective is broad, encompassing information from the medical and social sciences and including legal and voca- tional issues, it offers a kind of one-stop shopping for epilepsy information. The NEL is staffed by profes- sional librarians who provide individualized refer- ence services. Because epilepsy literature can be dif- ficult to find at all but the largest medical libraries, the

NELalso provides document delivery. The literature cited in the database is current. Because the database is maintained in-house, citations are added as ma- terials are received.

The NEL has been supported since its inception by a major grant from the Parke-Davis Division of the Warner-Lambert Company. For more information about its services, contact the National Epilepsy Library, 4351 Garden City Drive, Landover, MD 20785, U.S.A. Telephone: (301) 459-3700.

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