Abstracts

Rationale: Internet social networking sites are increasingly used as a source of medical information. The video sharing site YouTube is reported to have over 1 billion visitors per day, demonstrating great potential power to educate about medical conditions including epilepsy, but also to proliferate negative stereotypes. For highly stigmatized conditions like epilepsy, posting of videos without consent could serve as a source of potential harm. A 2010 review of 10 epilepsy videos on YouTube raised concerns about informational value (Lo AS et al, Epilepsy Behav 2010, 17: 541). We reviewed 100 YouTube videos for content, informational accuracy, intent of posting, and to assess issues of individual privacy. Methods: YouTube was accessed on 4/25/2010 and the top 50 video posts identified by searching seizure (31,700 hits), epilepsy (9.690 hits), and convulsion (1,090) were reviewed. 50 additional home videos were identified starting with the highest rated searching by seizure then serially following the highest recommended link. All videos were rated by consensus of an epileptologist, EEG technologist, and epilepsy nurse. The 100 final videos included 71 home videos, 2 videos from epilepsy monitoring unit admissions, 23 professional multimedia videos, and 4 cartoons. Results: 34% were posted as humor/entertainment, 35% education, 30% requesting help, and 24% as part of a blog. 33% were labelled as showing seizure, but were deemed to show a non-epileptic event. The most widely viewed of all 100 were a television clip of a celebrity imitating a seizure (1,753,051 hits), a home video encouraging discontinuation of antiepileptic drugs in favor of medical marijuana (919,061 hits), and a cartoon of an individual faking a seizure to obtain narcotics in the emergency department (704,676 hits). The top 5 professionally made educational videos were viewed a mean of 126,353 times. The top 5 humor posts were viewed a median of 238,135 times. 20/100 showed someone faking a seizure as humor. 7 showed an epileptic seizure filmed by witnesses and posted as humor. In all home videos, subjects were easily visually identifiable and the majority included the subject s name. Many included additional identifying information such as age or details of medical history. 51/71 (72%) home videos showed a pediatric patient, 32 posted by a parent. These had a mean of 30,018 hits. Expressed parental intent in posting these videos was requesting help (47%), to educate others (19%), blog content (28%), or unknown (6%). Conclusions: YouTube is used a source for epilepsy education and information, however many videos - including the most popular - are stigmatizing or contain medical misinformation. Professional educational videos are less widely viewed than those portraying seizures as humorous. Home videos of children with epilepsy comprised half of the reviewed content, usually posted by a parent. Privacy issues are of concern, particularly for pediatric patients unable to personally consent to online posting of potentially sensitive videos, particularly as these are widely viewed.