A new study reveals that people are sharing images of their genitalia on social media in the hope of getting their sexually transmitted diseases (STDs) diagnosed by others. This disturbing news not only points at rise in STDs but also misconceptions and lack of motivation to seek authentic medical advice say researchers. The study was published this week in the latest issue of the Journal of American Medical Association (JAMA).
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Dr. Eric Topol, the founder and director of the Scripps Research Translational Institute, not a part of this study, said in a statement, “It's concerning if people are getting the wrong diagnoses or are being misled as to treatments, which certainly could be the case. You wouldn't think STDs would be shared on social media, as it starts to get into matters of the utmost privacy.” The researchers explained that people are sharing pictures of their sores and blisters on social media and answers are crowd-sourced and often are supplied within a few minutes. Topol added, “So while crowdsourcing is not new, this is surprising," he said. "It's noteworthy that there's this much going on.”
Author of the study, John Ayers, an associate professor in the Infectious Disease & Global Public Health division of the University of California San Diego, said that Facebook, Twitter have all been platforms for sharing health concerns some of which are answered by persons not trained to diagnose the conditions or offer advice. Co leader of the study, Dr. Alicia Nobles, a postdoctoral research fellow at the Department of Medicine at UC San Diego, said, “Social media was not built to deliver health care. Currently, we don’t know if STDs, or other health issues, can be accurately diagnosed online, especially since people’s requests vary in the information they provide.” Nobles added that misdiagnosis on the internet, “could result in greater harm to themselves or passing an infection along to others.”
Ayers said that their study looked at the health communities on a social media platform called Reddit which is the sixth most popular website in the United States. For this study the team looked at a STD community of Reddit called r/STD and found that comments and activity within the community has doubled since 2018 November. There was a total of 16,979 related threads, wrote the researchers. He said, “About 58% of posts to Reddit's r/STD were explicitly requesting a crowd-diagnosis. About 38% of the people asking for a diagnosis shared an image of their symptoms.” He added that to these queries there was quick response and within minutes nearly 90 percent of the queries received replies. Within a day almost all queries received some reply, he explained.
As expected, there were errors in judgement of the responders, Ayers added saying that some of the diagnoses and treatments offered were “wildly inaccurate” and could do more harm than good. “Although crowd-diagnoses have the benefits of anonymity, speed, and multiple opinions, many are wildly inaccurate,” said Dr. Christopher Longhurst, UC San Diego Health professor and study co-author. Nobles said, “Apple cider vinegar cures all according to the crowd on social media.”
The study also noted that around 20 percent individuals with STDs looked for confirmation of their diagnosis that had been given by a doctor. They asked for treatment advice from the responders despite having been prescribed appropriate treatment by a medical practitioner. Ayers said, “One in five people who asked for a diagnosis actually want the crowd to explain how their doctor was wrong. They wanted the crowd to tell them, 'No, that's an ingrown hair,' and not a distinct sign of genital herpes.” He warned that this denial could be dangerous adding, “We have one case in the paper where someone wanted his diagnosis of HIV to be rejected. They wanted the crowd to explain how their doctor was wrong. He said, “Here's someone who knows they're infected but they're deluding themselves into thinking they're not, so they'll continue to be a risk to other people.”
According to the latest reports from the US Centers of Disease Control and Prevention (CDC) there has been an alarming rise in the number of cases of three STDs, gonorrhea, chlamydia and syphilis. Experts say that many are not aware of the symptoms of their condition and spread the infection to their partners. Denial of their infection would just add up to the risk of these individuals spreading the infection say experts.
Experts in the field have said that one of the reasons for crowdsourcing the diagnosis could be denial and another was lack of resources to pay for medical diagnostic services. Stigma and shame could be another reason for not addressing the condition in an acceptable manner and seeking anonymous help on social media. Dr. Eric Leas of the University of California, San Diego, one of the authors said, “Online someone can post a picture yet remain mostly anonymous. This can overcome some of the embarrassment that might come with going to ask a doctor.” Dr. Davey Smith, the chief of infectious diseases and global public health at UC San Diego, co-author of the study added, “Shame or a lack of access means many are missing an opportunity to get professional, life-saving help.”
Topol said, “The automatic reaction of a lot of doctors would be: 'This crowdsourcing is nonsense and it should stop.' And that's where I disagree.” He added, “If this is helping some people who can't afford medical care or can't get to a diagnosis in a timely way, I don't know that we should definitely rule it out as a pathway for health care. But we also want to assure its accuracy and point out to people that the diagnosis you get from Dr. Reddit may not be right.” “If people go online, and they talk about their behaviors and what they fear, then it can sort of normalize the experience and make them feel more comfortable … and encourage them to go speak with a physician,” said Nobles. Ayers agreed saying, “People are already seeking help in these social media communities, so why not take the education to them? It happens in a place that you can potentially easily intervene and guide them to good health.” Nobles added, “It would be important for us in the health field to acknowledge this is going on and prepare resources for people.”
Nobles AL, Leas EC, Althouse BM, et al. Requests for Diagnoses of Sexually Transmitted Diseases on a Social Media Platform. JAMA. 2019;322(17):1712–1713. doi:10.1001/jama.2019.14390, https://jamanetwork.com/journals/jama/fullarticle/2753884