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Y. Meng, L. Elkaim, J. Wang, et al.  Epilepsy & Behavior 2017; 71: 79-84.


The popularity of social media has reached people with epilepsy around the world. With more people living with epilepsy and seizures talking online, healthcare organizations and professionals have more interest in social media.

In this study, researchers looked at the use of social media related to epilepsy to see how it is used by people with or interested in epilepsy. The study explored reasons behind what people were looking for online and areas not addressed. 

Description of Study

Facebook and Twitter were searched for public accounts related to epilepsy. Search terms included epilepsy, epilepsies, epileptic, and seizure. Only accounts that talked about people with epilepsy were included. Researchers looked at over 400 accounts from June to August 2016. 
The 100 accounts reviewed in the study were put into the following categories:
  • Non-profit foundation
  • Business
  • Medical center
  • Support group
  • Research
  • Education
  • Journals and magazines
  • Events
50 posts for each account was looked at by researchers. Tweets and posts were categorized into common groups (for example, “inquiring about symptoms,” “queries regarding treatment,” etc.) and broader, general themes (for example, “requesting information”).

Summary of Study Findings

  • Facebook had 840 accounts and 3 million users in 2016. Twitter had 137 accounts and 274,663 users in 2016.
  • The majority of accounts were from the United States. 
  • Most of the accounts were foundations and support groups. 
  • There was a 100% increase in accounts about epilepsy from 2012 to 2016. 
  • The most common themes were “providing information” on medications and misconceptions about epilepsy (48%), “providing support and motivation” (17%), and product advertisement (14%). 
  • Only 1% of all posts related to surgical options for epilepsy.

What does this mean?

  • People with epilepsy are using social media for information about epilepsy and social support much more frequently in recent years. 
  • Many opportunities exist for providing information, education, and support for people with epilepsy, but care must be taken to identify credible educational resources from commercial marketing. 
  • The lack of posts about surgery may reflect opportunities for raising awareness about this treatment. Yet the complexity of the topic may make this difficult to address in short social media messages. 

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Article published in Epilepsy & Behavior, June 2017. 

Authored By: 
Liz Dueweke MPH
Authored Date: 
Reviewed By: 
Joseph I. Sirven MD
Tuesday, July 18, 2017