Social media health communities have been quietly reshaping healthcare as part of a growing trend to raise awareness and empower patients. Some medical professionals caution, however, that these websites might contain inaccurate or unsubstantiated information.
It is the next step in the evolution of social gatherings, but with wider reach. Instead of asking a friend or acquaintance to recommend a good doctor or explain how they are coping with disease, you can connect with a larger online community for all sorts of advice and health-related information.
“The Internet allows these conversations to expand beyond our typical geographic confines and connects us with like people faster than ever before,” said Colleen Young, Community Director at Mayo Clinic Connect. The Mayo Clinic was one of the early adopters of social media channels to further health-related discussion.
Engaging with others in a user community has clear benefits that help patients get more out of their professional health encounters, said Professor Eivor Oborn of Britain’s University of Warwick in an email. Oborn recently did research on the benefits of social media health communities.
There are numerous social health communities, such as Mayo Clinic Connect, Health Unlocked and Mumsnet, to name a few. They all have different purposes, functions, and corresponding limitations. Some are frequented by doctors who answer questions and offer advice. Others are patient-based information exchanges.
Exchanging referral advice for doctors and clinics and personal knowledge about side effects of medications, for example, boosts patients’ confidence in their medical community. It helps them ask more informed questions, and it also narrows the knowledge gap between patients and clinicians.
When the information is accurate, Oborn said it empowers patients to engage in a deeper way with their treatment process so that it “can have important positive impacts.” She cautioned that some of these communities could include misinformation, however, which might be misused for self-diagnosis, or might offer bad advice to patients looking for help.
It is a balancing act between risk and benefit, she added. And her advice is that information from any type of website, particularly an online patient community, “should never replace medical contact, but should serve as an adjunct.”
Nitin Damle, president of the American College of Physicians and a practicing internist, also advised caution when viewing information on social health websites that is not medically substantiated.
While social health communities can be “of value if they do provide accurate information, support groups for patients, and recommend consultation with your internist for further care,” he said some of them might perpetuate the “spread of false information or generate patient anxiety about their medical condition.”
In some cases, “the information is not contextualized and [patients] need to bring their questions and concerns to their internist for proper vetting and accurate information about their particular clinical circumstance,” he said in an email.
Damle, who practices in areas with a high prevalence for Lyme disease, said patients often search the Internet and social media communities for support and more information about this disease, but they sometimes find “the information is inaccurate in regards to testing, patterns of infection, symptoms and diagnoses. This includes ‘chronic Lyme disease,’ which is not recognized in the peer- reviewed medical literature.”
Sometimes, “patients then will come in with many questions, demands for treatment, and misconceptions, which need to be sorted out,” he added.
Young conceded there are concerns among health care providers about the consequences of sharing misinformation through social media. But she said that has provided the Mayo Clinic with an opportunity “to join the conversations and provide evidence-based information to augment information and in some cases, correct misinformation.”
“Social media is ubiquitous and can’t be ignored,” she added. “One doesn’t have to look far these days to find patients and clinicians using social media wisely.”
When approached with caution, Oborn said social media communities enable “new possibilities that can be very positive” and that cannot be achieved through research trials or formal health care systems.