In a recent study, examining the 15 largest Facebook communities dedicated to diabetes, researchers found "tentative support" for the health benefits of social media in the management of chronic disease. Harvard University and Brigham and Women’s Hospital researchers analyzed 690 individual postings on wall pages and discussion boards written by 480 unique users and published their findings online in the Journal of General Internal Medicine. Researchers found that a significant percentage of online communication was promotional in nature, generally for non-FDA approved products, or were efforts to collect patient information.
“There’s a ton of evidence that shows that social connectedness or social capital is associated with better health and more specifically with better behavior,” says William Shrank, M.D., MSHS, senior author of the study and affiliated with the Division of Pharmacoepidemiology and Pharmacoeconomics at Brigham and Women's Hospital (Boston). “The patients who are more connected often times adhere better to their medicine and are more likely to adhere to appropriate diet and exercise.”
Shrank’s theory is that better patient behavior comes from the reinforcement from communicating with other patients with similar conditions. Nearly one-quarter of the posts (24 percent) represent sharing of personal information that is unlikely to be shared between patient and doctors, such as individuals discussing carbohydrate management in the setting of alcohol consumption.
There was, however, some other conversations on Facebook that raised concerns about the authenticity of participants. “We saw that one out of every four postings was promotional in nature, and there was no disclosure,” Shrank says. “That raises important challenges for patients trying to figure out who’s the real deal on a Facebook page.”
“The two things that were alarming were the promotional nature of some of the postings and also there’s a lot of data collection happening,” he adds. “There’s a lot of postings asking participants to fill out surveys and trying to gather data, and we don’t know what that’s about either.”
Policing social media sites is not an easy task, Shrank says, as it’s difficult to regulate people’s speech on the Internet. He adds that the industry is broadly pondering two options for either self-regulation by patients or having health professionals police content. “The FDA and FTC have been thinking a lot about this and are considering how to regulate rules about disclosure, but it’s unclear how it’s all going to play out,” he says. “How do we create these sites to better authenticate the user and make sure they are as safe and constructive as possible?”