Facebook has become part of the fabric of modern life. As its impact continues to grow, so do the reasons people have for accessing the site. One trend in this regard has been for people with chronic diseases to use Facebook as a source of information and support.
So far, scientists haven’t paid much attention to this phenomenon. We don’t know for example, the extent to which information that can be accessed through Facebook is clinically accurate. In addition, we’re not sure about the extent to which people are being encouraged to engage in unproven or potentially harmful behaviors. We also haven’t characterized efforts by private companies to promote their products in what amounts to a wholly unregulated environment.
To characterize Facebook as a source of knowledge, support, and engagement for people who have a chronic disease, Jeremy Greene and colleagues at Harvard Medical School identified the 10 largest Facebook groups that were focused on diabetes. They subsequently downloaded and examined recent wall posts and discussion topics from these groups.
In all, they identified 480 unique users from 690 comments in these groups.
Not surprisingly, Greene’s group found that patients with diabetes were joined by family members and friends in the groups, and that group members freely shared personal health information during their efforts to seek guidance, feedback, and emotional support.
According to Green’s group, nearly two-thirds of all posts focused on sharing personal tips regarding the management of diabetes. More than 13% of the posts responded directly to information requests made by others, and nearly 29% of them were intended to provide emotional support.
Green’s group noted that most posts did not promote specific products, but advertising was indeed common throughout all discussion threads and wall posts. In fact, product promotions appeared alongside 27% of the discussions and wall posts reviewed by the scientists. These typically took the form of testimonials—nearly always written in the first person—designed to hype so-called “natural” products that had not been approved by the FDA.
Clinically inaccurate information was found to be present in only 3% of the posts, but in more than a third of the instances in which it was found, it was associated with one of these promotions.
(In the Discussion section of their write-up, Green’s group provides several examples of these promotions. It’s worth the read!)
The authors concluded that their findings provide “tentative support of the proposed public health benefits of social networking media in the management of chronic disease. Users gain interpersonal and community support from wall posts and discussion threads, they access forms of specialized knowledge on diabetes management from peers, and can articulate positive but realistic self images as diabetic individuals and a mobilized diabetic community.”
“Moreover,” the authors continued, “we found very little evidence of dangerous, misleading, or risky self-medication behavior being supported by Facebook pages for patients with diabetes. However, inability to verify the identity of the poster—and the prominent use of Facebook pages for the promotion of non-FDA-approved therapeutic modalities — poses a significant problem to the trustworthiness of any single piece of information on (Facebook).”
Green’s group seems overly gratuitous in its conclusions. Clinicians need to ask patients about the sources used by their patients to obtain medical information, and they need to be aware that several sources contain potentially dangerous misinformation. Policymakers need to consider how much longer they’re going to sit back and do nothing even as Facebook’s wild-west advertising bonanza creates the potential to put patients in harm’s way.