A number of Facebook communities have sprung up to lend emotional and moral support to patients with diabetes, but the sites can also house questionable and biased information, report researchers at Harvard University and Brigham and Women’s Hospital.
In analyzing 15 diabetes-related Facebook sites with an average of 9,289 participants and 690 individual wall posts written by 480 users, researchers found one in four comments on the sites "were promotional in nature and generally for non-FDA approved products."
"To the best of our knowledge, this is the first study to analyze in detail the quality of the information that people with diabetes are sharing with each other through Facebook," says Dr. William H. Shrank, senior author of the study. "There are certainly public health benefits that can be garnered from these sites – but patients and doctors need to know it is really the Wild West out there."
Although patients with diabetes shared valuable insights into their conditions on the sites that normally bypass traditional medical channels, researchers found "tentative support for the health benefits of social media in the management of chronic disease."
Still, the Facebook sites dedicated to diabetes can offer users an venue for self-education, information sharing and community support. Yet, "we also saw little quality control around promotional and data gathering activities, and patients and policy makers should take note of that," says Shrank, adding that the research discovered little evidence of misleading or medically dangerous information on the sites.
"Social media is an evolving forum that clearly is attractive to people looking to share information and to find support and strategies for living with chronic disease,” says Troyen A. Brennan, executive vice president and chief medical officer of CVS Caremark. "This study shows the many ways that patients are benefiting from social networks but it is critically important for patients to understand the need for fact-checking," he adds.
CVS Caremark financed the study, which is published online in "The Journal of General Internal Medicine." Other key findings from the study include:
- A majority of posts (66%) are individuals describing their personal experiences with managing diabetes;
- Nearly one-quarter of the posts (24%) represent sharing of personal information that is unlikely to be shared between patient and doctors, such as individuals discussing alcohol consumption;
- Twenty-nine percent of the posts are by diabetic patients providing emotional support to others grappling with aspects of that disease;
- About 13% of the posts are providing specific feedback to information requests by others in the diabetic community; and
- Nearly 27% of the posts feature promotional activity and first person testimonials around non-FDA approved products and services.
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