Study of Diabetes Information Shared on Facebook Identifies Patient Benefits, Potential Risks of Health 2.0

Research Sponsored by CVS Caremark Offers Qualitative Analysis of Patient-to-Patient Interaction in Social Media

WOONSOCKET, R.I., Nov. 2, 2010 /PRNewswire/ -- At a time when patients are increasingly turning to social media such as Facebook for information about medical conditions and their treatment, a new study by Harvard University and Brigham and Women's Hospital researchers raises disturbing questions about the accuracy of the information on these sites – and its sources.

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The researchers, who examined the 15 largest Facebook communities dedicated to diabetes, found  "tentative support" for the health benefits of social media in the management of chronic disease – evidence of patients sharing valuable insights into their conditions not typically available through traditional medical channels as well as evidence of community-building where emotional support is abundant. However, 1 in 4 comments on these sites were promotional in nature, generally for non-FDA approved products, raising important concerns about the authenticity of participants on Facebook networking sites dedicated to diabetes.

The researchers also identified numerous incidences of surveys, marketing pitches and efforts to recruit patients for clinical trials where the true identity of the poster could not be confirmed. The results of the study, underwritten by CVS Caremark, were published on-line in the Journal of General Internal Medicine.

"Clinicians should be aware of these strengths and limitations when discussing sources of information about chronic disease with patients. Policy makers should consider how to assure transparency in promotional activities, and patients may seek social networking sites developed and patrolled by health professionals to promote accurate and unbiased information exchange," concluded the research team.

"To the best of our knowledge this is the first study to analyze in detail the quality of the information that people with diabetes are sharing with each other through Facebook," said William H. Shrank, MD, MSHS, senior author of the study. "There are certainly public health benefits that can be garnered from these sites – but patients and doctors need to know it is really the Wild West out there."

"The study outlines meaningful benefits that patients may experience when participating in these sites, such as self-education, information sharing and community support. However, we also saw little quality control around promotional and data gathering activities, and patients and policy makers should take note of that." Shrank added that the review found little evidence of misleading or medically dangerous information on the sites.

The 15 diabetes-related Facebook sites had an average of 9,289 participants. The researchers evaluated 690 individual postings on wall pages and discussion boards written by 480 unique users. Among the findings are:

  • A majority of posts (66 percent) are individuals describing their personal experiences with managing diabetes;
  • Nearly one-quarter of the posts (24 percent) represent sharing of personal information that is unlikely to be shared between patient and doctors, such as individuals discussing carbohydrate management in the setting of alcohol consumption;
  • Twenty nine percent of the posts are by diabetic patients providing emotional support to others grappling with aspects of that disease;
  • Thirteen percent of the posts are providing specific feedback to information requests by others in the diabetic community;
  • Twenty seven percent of the posts feature promotional activity and first person testimonials around non-FDA approved products and services.

"Social media is an evolving forum that clearly is attractive to people looking to share information and to find support and strategies for living with chronic disease," said Troyen A. Brennan, MD, MPH, executive vice president and chief medical officer of CVS Caremark. "This study shows the many ways that patients are benefitting from social networks but it is critically important for patients to understand the need for fact-checking."

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.

About CVS Caremark

CVS Caremark is the largest pharmacy health care provider in the United States. Through our integrated offerings across the entire spectrum of pharmacy care, we are uniquely positioned to provide greater access, to engage plan members in behaviors that improve their health and to lower overall health care costs for health plans, plan sponsors and their members. CVS Caremark is a market leader in mail order pharmacy, retail pharmacy, specialty pharmacy, and retail clinics, and is a leading provider of Medicare Part D Prescription Drug Plans. As one of the country's largest pharmacy benefits managers (PBMs), we provide access to a network of more than 64,000 pharmacies, including approximately 7,100 CVS/pharmacy® stores that provide unparalleled service and capabilities. Our clinical expertise includes one of the industry's most comprehensive disease management programs. General information about CVS Caremark is available through the Company's Web site at

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