The Mayo Clinic broke from established research publishing procedure by using Twitter to announce the upcoming release of an article on Celiac Disease—in 2009. Staff tracked followers’ response to the Tweet and used this information to distribute the study to certain followers with the disease before the study was available to the public, then asked the recipients to blog about the study. The Mayo Clinic also published audio and video clips on the study through its own blog, Facebook, and YouTube.
Five years later, the Mayo Clinic has 776 thousand Followers on Twitter and aggressively uses other social media: over half a million “Likes” on Facebook, the most popular health-related YouTube channel, even a social media health network and annual summit conference to help other medical institutions make use of new technology, all overseen by the Mayo Clinic Center for Social Media.
The center focuses on providing quality, in-depth health information to curious users in an interactive setting. One blog, Sharing Mayo Clinic, features stories from patients and family members.
While information provided through social media from professional groups like the Mayo Clinic are unlikely to pose safety risks, the same cannot be said for independent, non-professional sources. One review of prostate cancer videos on YouTube found that, of the top 38 videos (the first two pages returned by searching “prostate cancer”), 28% contained incorrect information, 62% were biased towards one form of treatment, and 76% appeared to be commercial marketing.
Other studies of medical information on social media have found similar or results; a Journal of Pediatrics analysis of Google searches found that only 43.5% of site results for a variety of infant sleep queries turned up accurate and relevant information. Of the types of sites found, social media had a poor showing: just 25.7% blogs were found to provide accurate information. Another study found poor safety precautions in high percentages of instructional videos on catheter insertion.
While non-professional social media is clearly an unreliable source of health information, this should not lead to the conclusion that public social media has no role in health. Rather, as the Mayo Clinic’s Sharing blog demonstrates, social media can be the perfect place for patients and family to share stories, provide links to reputable sources of information, and raise awareness of issues. Emily Kramer-Golinkoff of Emily’s Entourage has found social media to be the key to fundraising for her non-profit, which supports cystic fibrosis research.
For many patients, social media is a way to feel connected to a community of people who are going through the same experiences and an outlet to express suffering. “I do my best to not complain a lot at home. Instead, I use social media sites like Twitter and Tumblr to express how I’m feeling without having to burden my loved ones, ”says one patient who suffers from thyroid cancer and other chronic diseases. “I use support groups on Facebook to talk with other people, share our experiences with doctors, medications, and alternative treatments. We also share coping strategies.”
This patient’s experience reveals the thin line between appropriate use of social media in healthcare and the risk of trusting dangerous misinformation. For feeling a sense of community among patients and raising awareness, public social media can be a powerful resources. When seeking medical information through social media, however, the chances of getting accurate responses are far higher with professional institutions.