Handle online advice with care

| Nov 17, 2010

If you're getting information about diabetes from groups or friends on Facebook, you might want to be careful. A new study suggests that a quarter of posts in these groups are possibly ads, and not for FDA-approved treatments, either.

Scientists from Harvard University and Brigham and Women's Hospital conducted the study, which looked at more than a dozen Facebook diabetes groups. And while their findings raised some concern, they also found "tentative" evidence of positive effects from the use of social media.

According to William Shrank, MD, the study's senior author: "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."

How did patients use these Facebook groups?

Most of the posts -- 66 percent -- were people sharing their experiences with the disease. The informal, social context of such groups meant that people were comfortable talking about their challenges and successes in managing diabetes.

And nearly a third of posts -- some 29 percent -- were messages specifically offering emotional support for those managing the disease.

It's important to note here that percentages mentioned in the study overlap -- some of this 29 percent is shared with the 66 percent mentioned earlier, for instance, as people's sharing of their experiences could also be a form of support.

Matters become more complicated the further one looks into the report. Only 13 percent of responses answered specific requests for information from the online communities. For a disease as centered on management as diabetes, such a percentage seems small.

And then there are the ads. Some 27 percent of posts were specifically promotional or included testimonials about treatments or services that aren't FDA-approved. Researchers said there seemed to be little effort to screen these kind of messages.

Troyen A. Brennan, MD, the executive vice president and chief medical officer of CVS Caremark, which sponsored the study, sounded a note of caution: "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."

The study did add, however, that the information found in the groups wasn't necessarily dangerous or misleading -- just unscreened.

Researchers looked at 15 diabetes-themed Facebook groups, with more than 9,000 members between them. They analyzed 690 posts from 480 different users. The study appears online in the Journal of General Internal Medicine.

Ultimately, scientists said, it's important for health care professionals to know where patients are getting their information. And it's also worth knowing that marketing efforts are spreading, unregulated, through social networks.

"Clinicians should be aware of these strengths and limitations when discussing sources of information about chronic disease with patients," the researchers wrote. "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."




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Categories: Diabetes, Diabetes, Health Care, Inspiration, Online Resources, Psychology, Software

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Posted by Katharine on 17 November 2010

The use of social media for diabetes information is unregulated and may not necessarily represent the "Truth". However, the "authoritarian" sources of information such as Diabetes UK, ADA and other national diabetes associations consistently fail to tell the Truth about what foods work for diabetes, obesity, arteriosclerosis and cancer prevention. Why not have a look at them?

Posted by Anonymous on 17 November 2010

There are a few commenters on this website that offer advice or "spam" options. I have never seen an instance here where such information is deleted because of the contents of the post. I also have never seen an instance where someone went off the deep end and followed the advice given. Has anyone been burned by what they read here?

Posted by chanson3633 on 17 November 2010

I agree that "it is critically important for patients to understand the need for fact-checking." I think the vast majority of users of these services are very good at fact checking. Actually, being in a group, its likely that some members are really great fact-checkers, and they will share their information with the group. As Katherine mentioned, just because the ADA recommends something doesn't mean it's the best way to go.

Posted by Anonymous on 18 November 2010

Considering this article is found online and I just shared it on facebook, does that I'll take this information with a grain of salt?! ;)

Posted by ScottKJohnson on 18 November 2010

Interesting article, and fun to read.

Regarding the small percentage of answers for specific requests for information, I think it might have a lot to do with what those requests are.

I think many people involved with social media in the diabetes community are pretty savvy users and know that diabetes is different for each and every individual.

If those requests are for things like insulin doses and medication adjustments, it makes sense that the savvy users would be hesitant to respond. I would hope that many would explain that it is impossible for anyone, except *maybe* someone in that persons health care team.

I think it also makes sense that there was a high percentage of posts about personal experiences and emotional support. Those specific aspects are really what make the diabetes online community such a special place in my humble opinion.


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