By Dennis Thompson
"I'm really scared because they said my results showed 'HIV-1 Confirmation.' I have to go back and get another test but I'm wondering is the doc wrong, do you think I have HIV?" the person wrote.
People worried that they have a sexually transmitted disease are more often turning to social media to receive a diagnosis, according to a report published Nov. 5 in the Journal of the American Medical Association.
Nearly 3 of every 5 posts to Reddit's STD forum is seeking a "crowd diagnosis" of a suspected infection, often with an accompanying photo of affected genitalia, said senior researcher John Ayers. He's an associate professor with the Division of Infectious Disease and Global Public Health at the University of California, San Diego.
Worse, 20% of people requesting an STD crowd diagnosis through Reddit specifically sought a second opinion after receiving a diagnosis by a health care professional.
"One in 5 people that went on here was already told by a doctor what their condition was," Ayers said. "They go on social media to refute that diagnosis."
He said the phenomenon is disturbing, and not just because it takes the dreaded office question, "Does this look normal?" to a global scale.
There's a good chance that people are being given misleading or wrong information, which increases the risk of spreading the infection to others, Ayers said.
"We're undergoing an STD epidemic right now, and in part that epidemic may be fueled by people's reliance on social media for health care," he said.
Ayers cited the frightened HIV-positive patient as an example. That post received a reply within an hour, researchers found.
"They go online and they get told they don't have HIV, which means that person is going to go now and infect more people," Ayers said.
Rising rates of STDs
The rates of new HIV diagnoses in the United States have remained stable in recent years, according to the U.S. Centers for Disease Control and Prevention, but infection rates for other STDs are skyrocketing:
- Chlamydia infections are up 19% since 2014, and now stand at 1.8 million.
- There's been a 63% increase in gonorrhea cases during that time, to more than 583,400.
- Primary and secondary syphilis are up 71%, with more than 35,000 cases.
- Congenital syphilis passed from mother to baby has increased 185%, with more than 1,300 cases.
Ayers and his colleagues noted that people are increasingly turning to social media for information about STDs and other illnesses.
"Remote care" and "telemedicine" are concepts that have been kicking around for some time, but doctors may be surprised by the extent to which people already are participating, Ayers said.
"People are already doing remote care. They're just doing it in the wrong setting. They're doing it on social media," he said.
To gain some understanding, the researchers focused on Reddit, a social media website with 330 million active monthly users. The site hosts more than 232 health forums, also called "subreddits," including one focused on STDs.
"None of them are dedicated to diagnosis," Ayers said. "They're all about sharing information and social support. But the reality is they all turn into a forum for crowd diagnoses."
Ayers and his team gathered posts on Reddit's STD forum from its start in November 2010 through February 2019, nearly 17,000 in all.
The monthly number of posts have been steadily increasing over the years, with 908 appearing in January and February 2019.
Researchers drew a random sample of 500 posts to see how many were seeking crowd diagnoses.
About 58% of posts requested a crowd diagnosis. Nearly one-third of those requests included a photo of the person's physical symptoms, "which basically meant they were sexting, for want of a better word," Ayers said.
"I went to the doc a few days ago and he said it's genital wart," the post continued. "I'm floored because I always use condoms. I recently shaved so the doctor could be wrong and they're ingrown hairs? Here's a pic. I'd appreciate a second opinion. If it is warts, I may try apple cider vinegar first."
Nearly 9 out of 10 requests for a crowd diagnosis received a reply, and many received multiple replies, Ayers said. Some posts received a reply in less than a minute.
"Crowd diagnoses are becoming popular because strangers are so willing to try to help," Ayers said.
He noted that 79% of requests were answered in less than a day. "Try getting a doctor's opinion in that time," Ayers said.
Can health care take advantage of social media?
Dr. Stacey Rizza is an infectious disease expert at the Mayo Clinic in Rochester, Minn., who reviewed the findings. She said she's alarmed that people are turning to social media rather than doctors to deal with their STDs.
"In my opinion, I don't think that's the appropriate way to diagnose anything," Rizza said. "But in infectious diseases, it's not just that one person. Other people will be impacted, too."
While it is concerning, Dr. Amesh Adalja sees opportunity in the trend, as well.
"This phenomenon should be seen as an opportunity for health care providers to engage with patients on social media to ensure accurate diagnosis and advice is being given," said Adalja, a senior scholar at the Johns Hopkins Center on Health Security in Baltimore who also reviewed the study. "Exploiting the ease of social media inquiry will likely become an increasingly important way to interact with patients."
Ayers agreed. He said public health officials and organizations should partner with social media platforms to improve the information being shared and make sure people are turning to their doctor for a proper diagnosis.
He noted that Reddit's forum on suicide is staffed by volunteers who encourage people to seek qualified help.
"If that existed for the STD forums, maybe we could get more people to engage with the professional help they need and actually get better," Ayers said.