Healthcare Social Media Sites Neglect Privacy Protections
Analysis of diabetes sites indicates that many lack scientific accuracy and put users' personal information at risk.
As the Internet in general and social networking in particular are used as a point of reference for gathering and sharing health information, a study that examined 10 diabetes-focused social networking sites has found that the quality of clinical information, as well as privacy policies, significantly varied across these sites.
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The study, "Social but safe? Quality and safety of diabetes-related online social networks," was conducted by researchers in the Children's Hospital Boston informatics program who performed an in-depth evaluation of the sites and found that only 50% presented content consistent with diabetes science and clinical practice.
The research, published in late January in the Journal of the American Medical Informatics Association, also revealed that sites lacked scientific accuracy and other safeguards such as personal health information privacy protection, effective internal and external review processes, and appropriate advertising.
For example, misinformation about a diabetes cure was found on four moderated sites. Additionally, of the nine sites with advertising, transparency was missing on five, and ads for unfounded cures were present on three. Technological safety was poor, with almost no use of procedures for secure data storage and transmission. The study found that only three sites support member controls over personal information. Additionally, privacy policies were difficult to read and only three sites (30%) demonstrated better practice, wrote the study's authors.
Elissa R. Weitzman, lead author of the study and assistant professor at Harvard Medical School, told InformationWeek that she was surprised at the high use of online health-related social networking among people with diabetes, and noted that the healthcare community and key stakeholders at these sites should implement policies to protect member privacy and align site content with medical science and clinical practice.
"Exchanging information on these sites has the potential to accelerate what we know about this disease and to rapidly disseminate vital information and support. However, the spread of information throughout online communities poses a safety concern for patients," Weitzman observed. "I'm surprised that the clinical healthcare system seems to be lagging behind patients and consumers in engaging with this medium and finding ways to support them, synergistically -- without trying to replace or control them."