Quality Varies in Social Networking Websites for Diabetics

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Researchers make recommendations for improving sites, provide safety tips for users. In one of the first formal studies of social networking websites targeting patients they performed an in-depth evaluation of ten diabetes websites.

Nearly one-half of U.S. adults who use the Internet participate in social networks. While these increasingly include health-focused networks, not much is known about their quality and safety.

Their audit found large variations in quality and safety across sites, with room for improvement across the board. Only 50 percent of the sites presented content consistent with diabetes science and clinical practice.

Even fewer offered both scientific accuracy and patient protections such as safeguarding of personal health information, effective internal and external review processes and appropriate advertising.
For instance, seven of the ten sites did not allow members to restrict the visibility of their profiles. Five carried advertisements that were not labeled as such. And three sites went as far as to advertise unfounded "cures."

"We saw that people are sharing incredible amounts of personal health information on these sites, including highly identifiable information," says Elissa Weitzman, an assistant professor in the laboratory of Kenneth Mandl. "They are eager to accelerate their understanding of the disease, obtain support, find treatments and see if their experience is common or different."

"There is on the one hand an enormous focus in the U.S. on health information privacy," Mandl adds. "But privacy in a social network is somewhat of an oxymoron. On the whole, these networks tend to be about exposing your information online."

The majority of sites studied did not include a "disclaimer" encouraging patients to discuss their care regimen with a healthcare provider. Many sites also missed opportunities to communicate essential diabetes information, such as the definition of "A1c"—a biomarker commonly used by diabetics to access blood glucose levels.

In addition to recommending improvements in these areas, the authors saw a need for increased moderation, for the credentials of moderators to be more visible and for periodic external review. Further, potential conflicts of interest - such as ties to the pharmaceutical industry - needed to be more clearly disclosed, and privacy policies easier to understand.

REHACARE.de; Source: Children's Hospital Boston

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