Quality varies in social networking websites for diabetics
In addition to recommending improvements in these areas, the authors saw a need for increased moderation, for the credentials of moderators to be more visible and for periodic external review. Further, potential conflicts of interest - such as ties to the pharmaceutical industry - 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. They 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.
The two 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,” Mandl says.
“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.
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.”
2. Find the privacy policy of any website where you register as a member, and make sure that you understand it.
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.
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Contact:
Keri Stedman
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Children’s Hospital Boston is home to the world’s largest research enterprise based at a pediatric medical center, where its discoveries have benefited both children and adults since 1869. More than 1,100 scientists, including nine members of the National Academy of Sciences, 12 members of the Institute of Medicine and 13 members of the Howard Hughes Medical Institute comprise Children’s research community. Founded as a 20-bed hospital for children, Children’s Hospital Boston today is a 392-bed comprehensive center for pediatric and adolescent health care grounded in the values of excellence in patient care and sensitivity to the complex needs and diversity of children and families. Children’s also is the primary pediatric teaching affiliate of Harvard Medical School.