Diabetics are found to be relying on health-focused networks online even though they are unsure about their quality and safety.
In one of the first formal studies of social networking websites targeting patients, researchers in the Children's Hospital Boston Informatics Program performed an in-depth evaluation of ten diabetes websites.
They found large variations in quality and safety across sites, with room for improvement across the board. 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.
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.'
"We saw that people are sharing incredible amounts of personal health information on these sites, including highly identifiable information. They are eager to accelerate their understanding of the disease, obtain support, find treatments and see if their experience is common or different," said Elissa Weitzman, lead author on the study.
Here are some of the safety tips for patients using online social networks:
1. Look for sites where the basic description of the disease and how to care for it is consistent with information provided by your doctor. Be very cautious of sites that advertise miracle "cures."
3. Try to use sites where you have maximal control over the sharing of your health data-where you can designate whether the information you disclose will be available to anyone online, members only or members who are "friends."
4. Look for websites that clearly label advertisements and disclose conflicts of interest.
5. Try to use sites that have moderators and at least periodically undergo external review.
6. Always remember that going online is not a replacement for visiting your doctor.
The findings have been reported in the Journal of the American Medical Informatics Association.