Patients using social media find dubious promotions

A practical look at information technology issues and usage

By Pamela Lewis Dolancovered health information technology issues and social media topics affecting physicians. Connect with the columnist: @Plewisdolan  —  Posted Dec. 6, 2010.

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Numerous studies have shown that patients with chronic disease benefit from using social media. But one study might force some who are touting the advantages to add a little caveat.

And, its authors say, the study should lead physicians to ask patients where they get information about their disease and how to treat it.

Jeremy Greene, MD, PhD, an instructor in the Division of Pharmacoepidemiology and Pharmacoeconomics at Harvard Medical School, co-wrote a study published online Oct. 13 by the Journal of General Internal Medicine that looked at the promotional activity on 15 Facebook groups dealing with diabetes.

His research found that although the Facebook pages provided a forum for reporting personal experiences, asking questions and receiving feedback, "promotional activity and personal data collection are also common, with no accountability checks for authenticity."

Dr. Greene's research, which included 480 unique users and 690 comments over 15 Facebook pages, found that 27% of the posts featured promotional activity, usually presented as a testimonial, for products not approved by the Food and Drug Administration. Two-thirds of the posts included unsolicited sharing of diabetes-management strategies.

The researchers looked at only the 15 most recent posts on each page.

They found that each group had an average of 9,289 participants. The majority of participants posted only once, but of the 9% who posted three or more times, 30% were clearly promoting products, and 3% of the promotional posts contained inappropriate or unsupported therapeutic claims.

Dr. Greene, who also is an associate physician in the Dept. of Medicine of Brigham and Women's Hospital in Boston, said the promotional activity is probably much higher because the researchers were very conservative about how they characterized the posts. They were considered promotional only if a product was promoted by name with a Web link.

Online support groups

Many people with chronic disease have turned to social networking sites to form and participate in communities of like-minded patients with whom they can share information and provide support. As these online communities grow, they become a ripe target for marketers and advertisers who aren't always truthful about who they are and often promote products that might be unsafe.

A 2009 study by the Pew Internet & American Life Project found more than one-third of American adults have a profile on a social networking site. In March, Pew published a separate study that found that 62% of people with chronic disease go online, and 36% of adults with chronic disease say they or someone they know has been helped by following medical advice or health information found on the Internet. The researchers said two online activities stand out for patients with chronic disease -- blogging and online health discussions.

Sites like Twitter and Facebook make it easier for patients to find discussions about certain topics. On Twitter, users can place a hashtag (a phrase beginning with #) in their tweets to help categorize discussions around a certain topic.

For example, the hashtags "#cancer" and "#heartfailure" are very active on the site. Users can join discussions by doing a search of those hashtags and following the people participating in the discussion.

On Facebook, sites for most every condition have been created for patients to find support and share information. The pages can be found by doing a search on Facebook of the name of the condition.

But as information becomes easier for patients to find, it also has become easier for advertisers to locate their core audiences.

Dragan Ilic, PhD, a senior lecturer in evidence-based clinical practice in the Dept. of Epidemiology and Preventive Medicine at Monash University in Australia, published a study in the July-August issue of Telemedicine and eHealth that looked at patient education and the Internet. His research found that the Internet creates the potential for bad information to harm patients in many ways.

"Inaccurate or misleading information posted online can have significant physical, emotional and financial implications for consumers," Ilic wrote. "Inappropriate treatments, adverse side effects, false hope and/or anxiety associated with newfound medical information, as well as the expense associated with purchasing of products and services, all have the potential to negatively affect consumer health outcomes."

Monique Levy, senior director of research for Manhattan Research, said even though promoters of unregulated products can be quite crafty in their advertising efforts, "consumers aren't stupid."

"What we've found is that most consumers verify information they have found on user-generated areas of social media either with friends and family or with their physicians," Levy said. "Relatively few will just make a decision to stop or change their treatment on their own."

Dr. Greene said the message physicians should take from the research is that they need to open a dialogue with patients about what they are learning online and what advice, or drug recommendations, they are implementing because of their online activity.

"Just as physicians have learned in the last 10 to 15 years that we really need to pay attention to alternative medicine and really ask patients if they are taking any alternative medicines or dietary supplements, we really need to start explicitly paying attention to this additional fear of new social media," he said.

"Physicians should be asking patients where they learn about their conditions, where they learn about potential cures or tools to help them manage their conditions, and encourage an open conversation where patients can feel comfortable bringing in information they have learned on social media."

Dr. Greene said he didn't write the study as a "scare piece." He found many great examples of patients helping one another in online communities, and added that socially isolated people fare much worse than those in supportive communities. But patients need to be more aware that potential harm exists, he said.

Pamela Lewis Dolan covered health information technology issues and social media topics affecting physicians. Connect with the columnist: @Plewisdolan  — 

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External links

"Online Social Networking by Patients with Diabetes: A Qualitative Evaluation of Communication with Facebook," Journal of General Internal Medicine, Oct. 13 (link)

"The Role of the Internet on Patient Knowledge Management, Education, and Decision-Making," Telemedicine and eHealth, July/August (link)

"Adults and Social Network Websites," Pew Internet & American Life Project, Jan. 14, 2009 (link)

"Chronic Disease and the Internet," Pew Internet & American Life Project, March 24 (link)

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