Around a fifth of videos posted on social media could be containing wrong information and misleading social media users, according to new research from Canada published in the journal Epileptic Disorders.
Researcher Maggie St-Pierre and her colleagues looked at 563 videos from social media platforms TikTok, Instagram and YouTube using the term ‘epilepsy’ between 2016 and 2025.
They were further broken down by style of video, into stigmatisation, educational, medical advice, personal experience, joke/entertainment, oblique reference, opinion, and asking for advice. Most videos were in the personal experience or educational categories.
Of the social media videos included, 167 came from TikTok, 196 from Instagram Reels and 200 from YouTube Shorts. All the videos were watched by evaluators, who found that 102 of them (18.1%) contained wrong information.
TikTok had the highest rate of deliberate or accidental wrong information from the social media platforms included in the study, with nearly a third of the epilepsy videos from this platform containing dis- or misinformation.
The highest proportion of wrong information was seen in the medical advice category, with nearly three quarters containing wrong information (72.7%), followed by personal experience (25.1%).
Consequences of wrong info in social media videos
While the study authors say more research is needed into the effect of false information in shortform content in online social media videos, they say this could have a detrimental effect on people. It could result in people not taking treatment and medication as advised or delaying seeking help due to false perceptions of the condition.
The researchers also found that 115 videos contained clinical spells like seizure events or effects from the health condition. However, of these, more than half were likely to have been a result of functional/dissociative seizures (FDS) rather than epilepsy, according to the evaluators.
The wrong representation of FDS as epilepsy could have a bad effect on people, weakening their trust in their health professionals and treatments, the researchers explained.
The study authors said this shows the need for doctors to address this issue with patients and for epilepsy organisations to actively share accurate and accessible information on platforms hosting shortform social media videos.
Trusted information from Epilepsy Action
Epilepsy Action shares accurate epilepsy content across all three of these platforms linking to its advice and information pages which are PIF TICK certified as trusted information.
You can find real life experiences, information on living well, behind the scenes sneak peeks and information to help educate the general public.
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