Survey turns 'critical eye' toward standards for healthcare social media sites

By Molly Merrill
01:28 PM

There is great variability in the standards used to ensure social media sites provide effective information and good answers to health questions, according to a new survey that examined diabetes-related sites.

The survey was conducted by Harvard University, Brigham and Women's Hospital and CVS Caremark, and was published in the Archives of Internal Medicine.

When researchers examined diabetes-related social media sites they found they all use different communication and financing structures, vary in how they offer expert participation and have little in common when it comes to oversight of content and membership criteria.

"Online social networks may play an increasing role in health education as primary care physicians see increasing numbers of patients, limiting time for telephone consultations to answer questions related to chronic disease management, and as a Web-savvy population ages and develops more chronic diseases," the researchers said. "Our evaluation of commonly used online social networks focused on diabetes highlights the popularity and wide variability (of the Internet sites)."

The researchers began their review by identifying 300 online diabetes-related sites identified through a Google search. They narrowed that number to 23 websites that were not attached to any news or academic institutions. The final study reviewed 15 websites in depth, ranging in size from having 3,074 members to more than 300,000, with a majority having more than 10,000 members. Eighty percent of the sites linked to Facebook, while two-thirds networked through Twitter.

The researchers said that information required for site membership was minimal and only one site required an extensive profile be sent to the site administrator for approval. Physicians were available to answer questions on only 33 percent of the sites, while 67 percent of the sites called for site administrators to review content. The researchers noted that on 13 percent of the sites there was no apparent policing of information posted.

"Social media is clearly attractive to people looking to share information and to find support and strategies for living with chronic disease," said Troyen A. Brennan, MD, executive vice president and chief medical officer of CVS Caremark. "This study shows we have a long way to go before we can be confident patients are receiving high quality, accurate information about their conditions through this medium."

Industry advertising is allowed on all but three of the sites. Half of the sites that featured advertising had information from pharmaceutical manufacturers, 67 percent had ads from diabetes device manufacturers and 13 percent published ads purchased by insurance companies. In addition, two-thirds of the sites allowed advertisements related to diet and exercise for diabetics.

"We are looking at these sites with a critical eye because they represent an important healthcare tool of the future, and it is essential to determine how they can best help patients treat their chronic disease," said William H. Shrank, MD, of Harvard and Brigham and Women's and lead author of the study. "We were surprised at how differently they operate. There is clearly work ahead to make social media a powerful tool in helping patients manage their chronic illnesses."

The latest study is part of the CVS Caremark research effort aimed at developing a better understanding of patient behavior, with a special focus on medication adherence.

The study is the work of CVS Caremark's previously announced three-year collaboration with Harvard University and Brigham and Women's Hospital to research pharmacy claims data and other aspects of the patient experience to better understand patient behavior and medication adherence.