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In one of the first formal studies of social networking websites targeting patients, researchers in the Children's Hospital Boston Informatics Program found that sites targeted at diabetes patients varied in both the quality of information they provide and the safeguards they take for protecting patient privacy.
Researchers at Children's performed an in-depth evaluation of ten diabetes websites. Their audit found large variations in quality and safety across sites, with room for improvement across the board.
According to the Journal of the American Medical Informatics Association, 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.
The study found that seven of the 10 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 so 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, lead author on the study and an assistant professor in the laboratory of Kenneth Mandl, MD, MPH. "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 team evaluated diabetes websites that appeared prominently in Google searches and allowed members to create personal profiles and interact with each other. They looked at four key factors:
The average number of members per website was 6,707. Activity ranged widely among the sites, from more than 100 new posts per day to fewer than five new posts per day.
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.
The researchers noted that there was a need for increased moderation on these sites, for the credentials of moderators to be more visible and for periodic external review. They also found that potential conflicts of interest existed – such as ties to the pharmaceutical industry – that needed to be more clearly disclosed, and privacy policies easier to understand.
Diabetes is only one illness in the rapidly growing list for which there are online social networks with thousands of users. The researchers chose to study diabetes-related networks because they were among the earliest to emerge and remain among the most active.
Researchers and colleagues in the Children's Hospital Informatics Program are further studying how these sites are used – how people choose to interact with them and how specifically they share their medical information. Last year, Mandl and Weitzman developed an application for the social networking website TuDiabetes that allows users to submit their A1c levels to be displayed in a worldwide map, as part of an effort to encourage diabetes management and inform public health efforts and research.
Mandl and Weitzman believe that the emergence of online health communities and their large number of participants reveal unmet needs for information and support of patients and families. "Social networking activity is clearly replacing or adding value that is missing in the standard healthcare system," says Mandl.
"We sought to jump start a conversation about how to balance patients' safety with their autonomy," Weitzman says, "as we're in an era where terrific levels of healthcare communication are happening outside of the usual channels."
This study was funded by the Centers for Disease Control and Prevention and the National Institutes of Health, including the National Institute on Alcohol Abuse and Alcoholism.
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