I’m sure we can all agree that there are major benefits to patients who communicate about their health online, particularly among others with similar conditions. This is a major component of the conversation surrounding “Health 2.0.”

What some people find in these communities is empathy, understanding, different points-of-view and perspectives, compassion and the freedom to participate in open discussions with people who truly understand what they’re going through.

But what they’re also getting in some cases, which is a big concern among the health care community — is misinformation.

That leads me to the results of a new study which involved an analysis of  the 15 largest Facebook communities dedicated to diabetes.  The research team analyzed 690 comments across those 15 communities which had a total of 9,289 participants. Throughout the research, they found evidence of some of what I just mentioned: emotional support and valuable insights. But a closer look at the comments revealed that one in four were promotional in nature, generally for non-FDA approved products, which they say raises important concerns about the authenticity of participants in Facebook communities dedicated to diabetes.

I don’t know about you, but I find that cause for concern.

The researchers also found surveys, marketing pitches and efforts to recruit patients for clinical trials where the true identity of the poster could not be confirmed. I placed emphasis on that sentence because I personally find it inexcusable. Marketers communicating in this space should be completely transparent, even if that means the participants in the community don’t want them there.

Here are a few other findings from the study, which was sponsored by CVS Caremark:

  • 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.

In my opinion, the findings illustrate the importance of these types of communities for people in need of support. But they also raise a serious red flag, as mentioned in this conclusion from the researchers:

“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.”

I find this topic intriguing, and I was happy to come across this kind of research. It will certainly be interesting to see what happens next as more of this kind of information is revealed based on these types of analyses.

Complete findings of this study can be found in the Journal of Internal Medicine.


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