The researchers, who examined the 15 largest Facebook communities dedicated to diabetes, found “tentative support” for the health benefits of social media in the management of chronic disease — evidence of patients sharing valuable insights into their conditions not typically available through traditional medical channels as well as evidence of community-building where emotional support is abundant. However, 1 in 4 comments on these sites were promotional in nature, generally for non-FDA approved products, raising important concerns about the authenticity of participants on Facebook networking sites dedicated to diabetes.
The researchers also identified numerous incidences of surveys, marketing pitches and efforts to recruit patients for clinical trials where the true identity of the poster could not be confirmed.
“Clinicians should be aware of these strengths and limitations when discussing sources of information about chronic disease with patients. Policy makers 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,” concluded the research team.
William H. Shrank, MD, MSHS, senior author of the study stated that, “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.” “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.”
“The study outlines meaningful benefits that patients may experience when participating in these sites, such as self-education, information sharing and community support. However, we also saw little quality control around promotional and data gathering activities, and patients and policy makers should take note of that.”
The 15 diabetes-related Facebook sites had an average of 9,289 participants. The researchers evaluated 690 individual postings on wall pages and discussion boards written by 480 unique users. Among the findings are:
- A majority of posts (66 percent) are individuals describing their personal experiences with managing diabetes;
- 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;
- Twenty nine percent of the posts are by diabetic patients providing emotional support to others grappling with aspects of that disease;
- Thirteen percent of the posts are providing specific feedback to information requests by others in the diabetic community;
- Twenty seven percent of the posts feature promotional activity and first person testimonials around non-FDA approved products and services.
This study shows the many ways that patients are benefitting from social networks but it is critically important for patients to understand the need for fact-checking.
Research Sponsored by CVS Caremark Offers Qualitative Analysis of Patient-to-Patient Interaction in Social Media by Harvard University and Brigham and Women’s Hospital researchers