Strangers on Social Media Diagnose Each Other's STDs. Doctors Are Concerned.
A new study dives into the phenomenon of "crowd diagnosis," wherein strangers on the internet ask each other for health advice.
With sexually transmitted disease (STD) rates soaring across the nation, thousands of Reddit users now turn to each other for help in diagnosing bumps and rashes in their nether regions — rather than relying on a doctor's trained eye.
Physicians observed the phenomenon in one corner of the internet that's definitely NSFW (not safe for work; potentially inappropriate content): the subreddit r/STD, wherein users can share stories, concerns and questions about "anything and everything STD-related."
A new study published today (Nov. 5) in the Journal of the American Medical Association, found that 58% of surveyed posts to r/STD specifically requested a diagnosis from the Reddit hive-mind. About a third of these posts included an attached image, so be wary if you visit the forum yourself. Reddit users appear eager to offer their medical assessments, as 87% of posts receive a reply, and 79% gain their first comment within 24 hours. But medical professionals warn that, though crowd diagnosis has its appeal, advice given by internet strangers may often be … well, just plain wrong.
"It's self-evident that strangers on the internet aren't going to be the best physicians," co-author John Ayers, a computational epidemiologist at the University of California, San Diego, told Live Science. While the users offering advice lack medical expertise, he said, those sharing descriptions of their diseased genitals also don't provide adequate information. When Ayers and his co-authors reviewed posts on r/STD, they themselves often couldn't draw a definitive diagnosis from a given post. "If we can't do it," Ayers asked, how can the average Reddit user?
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During their deep-dive into the dark corners of the internet, Ayers and his colleagues analyzed a sample of 500 r/STD posts shared between November 2010 and February 2019. Over that time frame, users shared nearly 17,000 posts to the forum. The authors only noted the nature of the posts themselves and timing of the subsequent replies; in other words, they could not assess whether the original posters actually took the advice they received from other Reddit users, regardless of whether that advice was good or bad.
Although the authors cannot say whether anyone actually came to harm after visiting r/STD, about 20% percent of the sampled posts did highlight a disturbing trend: Many users came to the site seeking a "second opinion" after receiving an initial diagnosis from a medical professional.
"We've seen this over and over again on the forum," Ayers said. Anecdotally, people often seek second opinions when they receive a diagnosis of herpes, a common viral condition that causes blisters to appear in the affected area, he said. But in one extreme case, the study authors noted that one user sought advice after being diagnosed with HIV, an infection that progresses into AIDS if left untreated. Although this user received prompt, anonymous assistance through the internet, in this case, the dangers of crowd diagnosis likely outweighed the convenience.
"A misdiagnosis could result in the continued spread of the disease, but may also have a ripple effect for the millions who view the post and perceive they have a similar condition, which they then wrongly self-diagnose," co-author Alicia Nobles, a data scientist at UC San Diego, said in a statement. Misdiagnosis may be a worst-case scenario; the authors didn't note whether users ever encouraged each other to follow-up with a doctor after seeking a second opinion online.
Though the new study focused on Reddit, crowd diagnosis takes places on every social media platform, Ayers said. As it exists, the widespread phenomenon is "a dangerous thing," but someday, online forums could help doctors deliver sound medical advice to more people who need it, he said.
Ayers said that the subreddit SuicideWatch stands as a positive example of crowd-sourcing. Moderators provide helpful resources for people struggling with suicidal thoughts, and keep the forum clear of toxic or misleading rhetoric. A similar infrastructure, moderated by medical experts, could serve to help people who are seeking information about STDs, and potentially refer them to local healthcare centers, if necessary. Healthcare institutions could partner with social media companies to establish such an infrastructure, Ayers added.
But for now, the best information about STDs probably won't be found in the depths of Reddit — if you have a pressing question, check out the Centers for Disease Control and Prevention website or see your local healthcare provider, instead.
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Originally published on Live Science.
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Nicoletta Lanese is the health channel editor at Live Science and was previously a news editor and staff writer at the site. She holds a graduate certificate in science communication from UC Santa Cruz and degrees in neuroscience and dance from the University of Florida. Her work has appeared in The Scientist, Science News, the Mercury News, Mongabay and Stanford Medicine Magazine, among other outlets. Based in NYC, she also remains heavily involved in dance and performs in local choreographers' work.
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