Researchers make recommendations for improving sites, provide safety tips for users
BOSTON Feb. 8, 2011
January 24 Journal of the American Medical Informatics Association
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."
Elissa Weitzman Kenneth Mandl
"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:
(1) agreement of content with diabetes science and clinical practice standards,
(2) practices for auditing content and supporting transparency,
(3) accessibility and readability of privacy policies, and
(4) 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 over 100 new posts per day to less than 5 new posts per day.
The majority of sites studied did not include a "disclaimer" encouraging patients to discuss their care regi