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Epileptic Disorders - Editor's Choice

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January 2016

Epilepsies and Wikipedia

A comment from Mike Kerr, Associate Editor
Information seeking behaviour for epilepsy: an info epidemiological study of searches for Wikipedia articles.
Brigo et al, EpileptiDisord, Vol. 17, No. 4, December 2015, p; 460-6

Epileptic Disorders December 2015

There are many applications of media and this is increasingly important in epileptology; as excellently highlighted in a recent symposium at the AES in Philadelphia. Doctors should no longer be threatened by patients bearing literature, newspaper clippings or pdfs of papers. However, we should be knowledgeable of the sources of information our patients identify.

This variety of sources may explain misunderstandings between patients and clinicians; this article by Brigo and colleagues provide valuable information in the way our patients locate knowledge from the web.
The authors focus on Wikipedia and they explored English speaking searches, and they provide fairly contemporary information from 2008-2014.

It would seem that people who search the site use broad terms, epilepsy and driving being commonly searched, more than epilepsy in children or epilepsy and employment. Epilepsy searches are less common than those for MS and similar to those for migraine, syncope is relatively less searched.

The article provides useful trend data and comparators. The authors make a strong point that people are searching on the negative impact of epilepsy. This should in my opinion strengthen our resolve to communicate negative impact in our clinical settings. The drive to communicate on SUDEP would be a clear example and it will be interesting to see how it figures in future wiki searches.

A Task Force of the ILAE is currently working in collaboration with Wikipedia to ameliorate information available

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