Sites like Facebook offer patients a platform to discuss health concerns, but the information provided is often inaccurate.
Although Facebook and other social networking applications provide patients with an opportunity to share their experiences with particular health conditions, the platforms don’t necessarily offer accurate health advice, according to research published in the Journal of General Internal Medicine.
In the study, which is part of a three-year collaboration between CVS Caremark, Harvard University and Brigham and Women's Hospital, aimed to evaluate the content featured on Facebook and other online social networking sites in terms of diabetes management.
“These new sources of knowledge, support, and engagement have become important for patients living with chronic disease, yet the quality and content of the information provided in these digital arenas are poorly understood,” said the authors.
For their research, William Shrank, MD, and colleagues from Brigham and Women’s Hospital and Harvard Medical School identified the 15 largest Facebook groups focused on diabetes management, and downloaded the 15 most recent “wall posts” for each group, and the 15 most recent discussion topics from the 10 largest groups.
The investigators found that “patients with diabetes, family members, and their friends use Facebook to share personal clinical information, to request disease-specific guidance and feedback, and to receive emotional support.”
Of the 690 postings analyzed, approximately two-thirds included unsolicited sharing of diabetes management strategies, more than 13% of posts provided specific feedback to information requested by other users, and nearly 29% of posts featured an effort by the poster to provide emotional support to others as members of a community.
Shrank and colleagues also found that approximately 27% of posts featured some type of promotional activity—generally presented as testimonials—that advertised non-FDA approved, “natural” products. And although clinically inaccurate recommendations were infrequent, there were usually associated with promotion of a specific product or service. Also alarming was the fact that 13% of posts were found to contain requests for personal information from participants.
They concluded that although sites like Facebook can be beneficial in providing a forum for reporting personal experiences, asking questions, and receiving direct feedback for people living with diabetes, promotional activity and personal data collection are also common on these sites, “with no accountability or checks for authenticity.”
In light of these findings, the researchers believe that “policymakers should consider how to assure transparency in promotional activities, and patients may seek social-networking sites developed and patrolled by health professionals to promote accurate and unbiased information exchange," said Shrank, the study’s senior author, in an online article.
"Patients and doctors need to know it is really the Wild West out there," he noted. “We saw little quality control around promotional and data gathering activities, and patients and policymakers should take note of that."
Do you speak to your patients about information that they obtain from social networking sites? What role, if any, do physicians have in ensuring that the content on these sites is accurate?