Social networking sites for diabetes patients lacking in quality, privacy
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:
- agreement of content with diabetes science and clinical practice standards,
- practices for auditing content and supporting transparency,
- accessibility and readability of privacy policies, and
- the degree of control members had over the sharing of personal data.
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.