Patient health sites might be delivering bad medicine

Many patients with chronic diseases seek support from online social networking sites, but a recent Harvard Medical School study found that the quality of the information they receive varies depending on the site they visit.

The study, published online Jan. 24 in the Journal of American Medical Informatics Assn., found that better oversight is needed in the online communities because the quality and safety of information on those sites is so variable (link).

Study co-author Kenneth Mandl, MD, associate professor at Harvard Medical School and a faculty member of the Children's Hospital of Boston's informatics program, said activities in social networking are complementary to, but not overlapping, the clinical sphere of chronic disease management.

But as that starts to change and an overlap occurs between social media and clinical activities, physicians need to be aware of which social networking sites their patients are visiting, which are worthwhile and which might exist for ulterior motives, he said.

From October 2008 to July 2010, researchers analyzed 10 social media sites for diabetes patients. Seven were for-profit websites and three belonged to a professional association or organization. Researchers looked at 28 indicators of quality and safety.

Only two of the sites included evidence of an outside audit on information shared. Seven had some evidence of moderators -- someone to police content -- but only three clearly stated the credentials of the moderators. Of the nine that included advertising, five didn't make clear when something was an advertisement. Ads for unfounded "cures" were found on three.

Elissa Weitzman, assistant professor of pediatrics at Harvard Medical School and adolescent medicine at Children's Hospital Boston, co-wrote the report. She said the study can offer various stakeholders a model of best practices on how social networking sites can provide the safest and most effective help for their users. She said health care systems are losing out by not taking advantage of opportunities to collaborate on social networking efforts.

"The phenomena [of social networking] itself in some ways is a big giant arrow pointing to some of the weaknesses, deficiencies or constraints on the traditional health care system and all its parts, whether it's patient education or advocacy or social support or effective communication," she said.

The study authors suggested that patients, patient advocacy groups and medical communities get involved with the oversight of social networking communities. They recommend that sites:

• Identify where patients can get help.
• Use credentialed moderators.
• Enlist periodic external review of member discussions, which would protect users from reading misinformation.
• Flag commercial content and commercial members.
• Ensure that privacy policies are easy to find.
• Provide for member control over sharing of personal health information.
• Use industry standards to protect individual health information.