Diabetes and Social Networking
Social networking is a relatively recent phenomenon that has become a part of our social lexicon. It seems that just about everyone has a Facebook account. Blogs have also become commonplace, and thus have become the source of an incredible amount of information, as well as providing "point of views." As such, not all information may be trusted as accurate and may just reflect the writer's interpretation. Websites such as HealthCentral clearly indicate the source of blogs posted, such as medical expert, community member, person with diabetes, etc., so that the reader is aware of who is posting information. Other online groups such as Children with Diabetes, and Permanent Neonatal Diabetes interest groups, serve to provide up-to-date information, along with commentary about diabetes specific concerns. There are several disease-specific information exchanges that exist on social networking sites such as Facebook. The authors, Greene, Choudry, Kilabuk, and Shrank recently published "Online Social Networking by Patients with Diabetes: A Qualitative Evaluation of Communication with Facebook" in the Journal of General Internal Medicine (DOI: 10.1007/s11606-010-1526-3). Amazingly enough, the authors performed a "qualitative" study to evaluate the content of Facebook communities that are dedicated to diabetes.
One major concern is that patients and healthcare professionals are unaware as to the extent of the clinical accuracy of information presented on Facebook and whether patients receive advice to enroll in potentially harmful trials or purchase ineffective remedies. (I sometimes receive emails on HealthCentral asking me to support some of these remedies or trials that are NOT evidenced based or proven to be effective). The authors of the study identified the 15 largest Facebook groups (after performing a search using "diabetes"). For each group, "they downloaded the most recent wall posts and the 15 most recent discussion topics from the 10 largest groups." The authors abstracted and aggregated 690 comments from wall posts and discussion topics from 480 unique users into a database.
What did they find? As with HealthCentral and other medical websites, people with diabetes, friends and family members look to Facebook to share personal medical information and anecdotes, ask questions of peers, to receive feedback and to receive emotional and psychosocial support. The results demonstrated the following:
- About 2/3 of posts included unsolicited strategies and suggestions to manage diabetes.
- Greater than 13% of posts provided directed feedback to requested information by posters.
- Almost 29% of posts reflected efforts by the writer to provide emotional support for the diabetes community members.
- About 27% of posts showcased some form of promotional activity, such as a testimonial presented by someone advertising products that are NOT FDA approved. Examples include natural products in which ingredients are not standardized or sometimes inconsistently replicated. (I am not talking about the proven natural products that seem to have a role in lowering blood sugar- particularly in the type 2 diabetes populations.) Of note, however, actual clinically inaccurate suggestions or recommendations were infrequent; but, if present, were usually associated with promotion of a specific product or service according to the authors of the study.
- 13% of posts contained requests for personal information of those participating on the Facebook site.
What may we conclude from this study? As with medical websites, Facebook is a source for patient support, information gathering, a forum to pose questions for others with the same disease state and to receive feedback from peers. However, "promotional activity and personal data collection also was common, with no accountability or checks for authenticity." The key is for the participant to be wary of information that is not substantiated and strive to find accurate data in trusted medical sources. Indeed, just because something is in writing or published does not equate to truth! It is important to understand that social networking is an extremely valuable tool, but does not always lead to the correct medication or therapy. Do not be fooled by scams, clinical trials that have no scientific basis, or by products that purport a cure. Clearly, if these products did provide a cure, every healthcare provider in the universe would be prescribing them!
In summary, social networking sites such as Facebook, medical websites, and other online forums are an excellent source of information, feedback, and emotional support. Use common sense and go the extra step to determine the accuracy of the information provided.