How good are social networking sites for patients?

A teenager with type I diabetes has general admission tickets to a U2 concert. She’ll have to stand in a crowd all day to get a decent spot, and wonders how to make sure her blood sugar doesn’t hit a dangerous low.

A grandpa with type II diabetes is tired of people thinking he can’t ever have any sweets. And a new mom with diabetes is too overwhelmed with her baby and work to manage her illness.

All three, from different nations and continents, recently shared their stories on a social networking site for diabetics – part of an increasing trend for patients to turn to online social networks for healthcare. I came across their stories, along with some identifying information, without even having to register as a member of the site I was on.

But is this a bad thing? I also came across a flood of great patient-to-patient advice, from simple snack suggestions to how to schedule diabetes care and how to think about the illness.

An audit of 10 prominent diabetes social-networking sites finds a mixed picture. The researchers, from the Children’s Hospital Boston Informatics Program, picked diabetes sites because they were some of the earliest to emerge, and they remain very active. While these sites can be an excellent source of information and support for patients, they have a number of shortcomings and risks to be aware of.

Only five of the 10 sites had content in line with diabetes science and clinical practice standards. Some didn’t trouble to communicate the definition of A1c, a biomarker widely used by diabetics to assess blood glucose levels. Others lacked clear, centralized information on having routine checkups, eye exams and lipid profiling, or on smoking cessation—all generally recommend for diabetics. Only three of the 10 sites included a disclaimer encouraging patients to discuss their care regimen with a health care provider.

Seven of the 10 sites didn’t allow members to restrict the visibility of their profiles. Five carried advertisements that weren’t labeled as such. And three went as far as to advertise unfounded “cures.”

So how can these sites improve? Beyond adding basic guidelines for care, defining medical terms and distinguishing ads from other content, researchers Elissa Weitzman and Ken Mandl recommend more moderation—with credentials of moderators clearly posted—and periodic external review. Privacy policies should be easier to understand, and potential conflicts of interest, such as ties to the pharmaceutical industry, openly noted.

The new findings are in agreement with a study from another Boston team, examining Facebook-based groups for diabetes patients. There, too, patients were receiving useful advice and emotional support, but privacy and promotional activities were concerns. In fact, about 27 percent of the Facebook posts studied were promotional in nature, and many of these centered on non-FDA approved products.

Meeting unmet needs

What I found most interesting in speaking to Weitzman and Mandl was their take on why patients are going online. Weitzman spoke of a “rapacious hunger” of patients and families to see how common or unique their experiences are, and to get emotional support.

“Social networking activity is clearly replacing or adding value that is missing in the standard healthcare system,” Mandl said.

I definitely saw this in my exploration of diabetes sites. While I tend to be suspicious of sharing medical information online, I saw people being helped in ways that just aren’t possible in a standard 8-minute doctor’s appointment. For free, they get day-to-day encouragement, camaraderie, and a wealth of very specific practical advice—the sort that comes only from years of living with an illness.