Rise in sexually transmitted diseases sees Americans turn to social media seeking diagnoses from strangers
Analysis shows that 20% of crowd-diagnosis requests were made after already getting a diagnosis from the doctor
Sexually transmitted diseases (STDs) are at an all-time high in the US, according to the Centers for Disease Control (CDC). And Americans are now turning to social media to seek medical help or to request for diagnosis on STDs from strangers. What's more, of those requesting a diagnosis, 20% did so to get a second opinion after receiving a previous diagnosis by a healthcare professional, says the research team from the University of California (UC), San Diego.
"Why do people turn away from a diagnosis from their physician and elect to seek one from the public? Anecdotally, some of the reasons we saw (but our study did not explicitly focus on) are denial and seeking reassurance from the public, which could indicate a need for additional support/resources for their diagnosis, and questioning the physician-diagnosis because their symptoms did not align with the online resources. And some stated that they sought a second opinion from another physician after soliciting a crowd-diagnosis, this second physician-diagnosis corrected a misdiagnosis from the first physician-diagnosis," Dr Alicia Nobles, a research fellow at the Department of Medicine, UC, San Diego, told MEA WorldWide (MEAWW).
According to the latest CDC report, released in October 2019, combined cases of syphilis, gonorrhea, and chlamydia reached an all-time high in the US in 2018. "Sexually transmitted diseases (STDs) can have severe health consequences. Among the most tragic are newborn deaths related to congenital syphilis, which increased 22% from 2017 to 2018 (from 77 to 94 deaths)," says CDC.
The researchers referred to this type of diagnosis on a social media platform as crowd-diagnosis, when the public seeks out medical diagnoses from strangers on social media. Online postings seeking information on STDs on the social media website Reddit were analyzed to see how often requests were made for a crowd-diagnosis and whether the requested diagnosis was for a second opinion after seeing a doctor.
Reddit, with 330 million monthly active users, hosts more than 232 health forums, and includes a large subreddit (r/STD) that allows users to publicly share "stories, concerns and questions" about "anything and everything STD [sexually transmitted disease]-related."
"Reddit is a social media website that rivals Twitter with 330 million active users and is the 6th most visited website in the US, ranked ahead of even Wikipedia, Twitter, and Amazon. We selected r/STD because it focuses exclusively on a health topic of substantial public health concern," says the team.
The researchers monitored all r/STD posts, from its inception in November 2010 through February 2019. The team found that the use of r/STD rapidly increased, with the number of posts doubling since November 2018.
"We have seen substantial increases in the number of patients in our STD clinics. But statistically, we should see more. Shame or a lack of access means many are missing an opportunity to get professional, life-saving help," says Dr Davey Smith, study co-author and Chief of Infectious Diseases and Global Public Health at UC, San Diego.
Where are those falling through the cracks turning? According to Dr Nobles, who co-led the study, leaders take it for granted that the public is relying on "Dr Google" for all of their health concerns. "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," says Dr Nobles.
According to the analysis, 58% of posts requested a crowd-diagnosis, of which 31% included an image of the physical signs. The researchers found that 87% of all posts requesting a crowd-diagnosis received a reply, many of which received multiple replies. The median time for the first response was approximately 3.04 hours, and 79% of requests were answered in less than one day. The study has been published in JAMA.
The findings, say the researchers, shows that crowd-diagnoses are becoming popular because strangers are so willing to try to help.
"On the positive side, crowd-diagnoses are fast and anonymous. Many people receive a crowd-diagnosis within hours, which is faster than most can get a doctor's appointment. Additionally, STDs are unfortunately stigmatizing, and discussing them with others online could potentially encourage them to see a physician," Dr Nobles told MEAWW.
"Our case study is especially conservative at estimating how common crowd-diagnoses maybe 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. Imagine all the other crowd-diagnoses the public is seeking on Reddit, Twitter and the like for STDs and other conditions," says Dr Eric Leas, an assistant professor in the Department of Family Medicine and Public Health and study co-author.
Fast response does not mean accurate
The research team cautions that while crowd-diagnoses have the benefits of anonymity, speed, and multiple opinions, many are wildly inaccurate.
"On one occasion, a patient had received an HIV diagnosis but turned to a crowd-diagnosis to be convinced the doctor was wrong. People, when faced with life-altering information, often want to delude themselves, and in some cases, they are finding it on social media," says Dr Ayers, the Vice Chief of Innovation in the Division of Infectious Disease and Global Public Health at UC San Diego, who co-led the study.
Moreover, says the team, the types of treatments recommended often go against a doctor's orders. For example, according to the crowd on social media, apple cider vinegar cures all.
The experts say that misdiagnosis could result in the continued spread of the disease, and might 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. Even if users responding to a crowd-diagnosis were trained experts, social media was not designed to deliver healthcare, says the team.
"The danger is that social media was not built to deliver healthcare. We cannot be certain of the accuracy of these diagnoses or ensure that people receive the treatment and/or resources/support that they need. We are not sure if some of these issues can be accurately crowd-diagnosed online and the medical training of those doing the crowd-diagnoses. If a person is misdiagnosed and someone makes medical decisions based on this information, it could mean that a person does not receive the appropriate treatment, potentially causing themselves harm and/or passing an infection to others," Dr Nobles told MEAWW.
Can crowd-diagnoses ever benefit public health
According to the research team, studying crowd-diagnoses can be an important tool for healthcare planning. They say while there are problems with crowd-diagnoses as they exist, there is also a tremendous potential to leverage this phenomenon to improve public health substantially.
"By studying crowd-diagnoses broadly, we could identify what conditions and what types of information the public is willing to share and build out evidence-based resources to match those needs. Few clinicians would have expected so much unmet demand for remote treatment referral among patients with potential STDs," says study co-author Dr Christopher Longhurst, professor of biomedical informatics at UC San Diego Health.
The researchers recommend that healthcare professionals could partner with social media outlets to promote the potential benefits of crowd diagnosis while suppressing potential harms, for example, by having trained professionals respond to posts to better diagnose and make referrals to the healthcare centers.
"It is our responsibility to ensure that the thousands or millions seeking out crowd-diagnoses get help. By partnering with social media companies, we can combat the spread of misinformation or misdiagnoses and ensure life-saving help is found. Social media platforms could be improved to facilitate more reliable and actionable crowd-diagnoses. For instance, experts could moderate requests for crowd-diagnoses, resulting in social media being a vehicle to connect the public to professional healthcare," says Dr Ayers.
"The public is asking for resources, and we (healthcare experts) could leverage social media as a medium to connect the public to the resources/help they are requesting," Dr Nobles told MEAWW.