Social media has become a juggernaut of a venue, where we come together to share pictures of our dogs, blowouts — and, sometimes, our genital warts. That’s according to a new study published this week in The Journal of the American Medical Association. Researchers out of UC San Diego’s medical school have found that thousands are seeking diagnostic help from total strangers on social media, sometimes to refute their doctor’s medical opinion and oftentimes to help them figure out if the have an STD. At a time when the Centers for Disease Control and Prevention is warning Americans about the rise of some sexually transmitted diseases, the study found people are looking to crowdsource what's ailing them down there. Not only are they posting on social media about their symptoms, but they're also including pictures to give fellow users a better idea of their conditions. Sometimes, answers to their questions are posted within minutes. But there's no way of knowing whether the responses are accurate.
The study analyzed health communities on the popular platform Reddit, specifically the subreddit "r/STD,” which has grown substantially since November 2018, the study notes. Researchers ultimately found that 58 percent of the posts on the Reddit board were explicitly requesting a “crowd-diagnoses.” Twenty percent of people in the group were asking for a second opinion after a doctor had already diagnosed them.
"Leaders [in healthcare] take it for granted that the public is relying on Dr. Google for all of their health concerns,” explained Dr. Alicia Nobles, a research fellow who co-lead the study, in a press release. “But people also want a sense of connection. The reason social media sites are so popular is they offer real interactions with real people. For those same reasons some may choose to seek out medical help on social media platforms.”
The authors noted that social media is an avenue for people who want help quickly, or who don’t have insurance or the money to go through traditional medical institutions. The study says that this is one way people who aren't being served by the healthcare system are managing to get help, and they say it’s only the beginning. “Our case study is especially conservative at estimating how common crowd-diagnoses may be because no one would expect that thousands of people would be willing to share pictures of their you-know-what on social media rather than seeing a trained physician,” explained Dr. Eric Leas, an assistant professor in the Department of Family Medicine and Public Health and study coauthor. “Imagine all the other crowd-diagnoses the public are seeking on Reddit, Twitter and the like for STDs and other conditions. ”
But one of the study’s co-authors, Dr. John Ayers, explains to Refinery29, that this probably isn't a good thing. He adds that it’s a much better idea to stick to crowdsourcing bakery recommendations online, rather than cherry picking opinions about your health.
“Crowd-diagnoses are becoming popular because strangers are so willing to try to help,” Ayers, the vice chief of innovation in the division of infectious disease and Global Public Health at UC San Diego, says. “Seventy-nine percent of requested crowd-diagnoses were answered in less than a day. Try getting a doctor’s opinion in that time… but fast doesn’t mean accurate.”
He says looking to your online community for help can be “reassuring,” but also dangerous. The study notes that in one Reddit post, a patient who received an HIV diagnosis turned to crowdsourcing “to be convinced the doctor was wrong,” Ayers notes.
Many STDs are treatable, and they’re nothing to be ashamed about. However, many conditions, from syphilis to HIV, require a prognosis from a doctor, because they can have serious symptoms if not tackled with the right course of treatment. That’s why it’s important people are getting accurate information — which crowdsourcing likely won't convey.
However, Ayers believes that the medical establishment could learn to work better with these online communities, adding information to the posts about where to go for free or cheap health care, such a Planned Parenthood or a Title X Clinic.
“People are clearly falling through the cracks, and one of those is crowd diagnosis,” Ayers says. “But we could better engage with people on social media, and get trained experts who can make referrals… Maybe we can form partnerships with social media companies, and find a way to make helping people more sustainable.”