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Disease Management Info via Online Groups Not Always Accurate
Harvard study identifies benefits, risks of social media communities in managing chronic conditions

By Stephen Miller  11/5/2010
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At a time when patients are turning increasingly to social media such as Facebook communities for information about medical conditions and their treatment, a new study by Harvard University and Brigham and Women’s Hospital researchers raises questions about the reliability of the information on these sites—and their sources.

The report, Online Social Networking by Patients with Diabetes: A Qualitative Evaluation of Communication with Facebook, was published in the November 2010 issue of the Journal of General Internal Medicine. The study was underwritten by CVS Caremark, a pharmacy benefit provider.

Biased Information

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, one in four comments on these sites were promotional in nature, generally for products that have not been approved by the U.S. Food and Drug Administration (FDA), raising concerns about the authenticity of participants on Facebook networking sites dedicated to diabetes. In addition, the researchers identified numerous incidences of surveys, marketing pitches and efforts to recruit patients for clinical trials where the identity of the poster could not be confirmed.

“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,” commented William H. Shrank, M.D., 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.”

Lack of Quality Control

The study outlines meaningful benefits that patients might 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 said.

He noted, however, that the study found little evidence of misleading or medically dangerous information on the 15 diabetes-related Facebook sites, which 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 their findings:

A majority of posts (66 percent) were individuals describing their experiences with managing diabetes.

Nearly one-quarter of the posts (24 percent) shared personal information that was unlikely to be shared between patients and doctors, such as individuals discussing carbohydrate management (and lack thereof) after alcohol consumption.

29 percent of the posts were by diabetic patients providing emotional support to others grappling with aspects of the disease.

13 percent of the posts provided specific feedback to information requests by others in the diabetic community.

27 percent of the posts feature promotional activity and first-person testimonials around non-FDA-approved products and services.

Necessity for Fact-Checking

“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, M.D., executive vice president and chief medical officer of CVS Caremark. “This study shows the many ways that patients are benefiting from social networks, but it is critically important for patients to understand the need for fact-checking.”

The study is part of CVS Caremark’s 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.

Report: Social Media Cuts Health Care Costs

Social media initiatives that help physicians, patients and the medical research community share patient information will drive down health care-related costs while improving the quality of care, a report concludes.

The November 2010 report, Healthcare Performance Management in the Era of "Twitter," was published by the Healthcare Performance Management Institute. Drawing on a number of case studies across the U.S., it provides examples of how social media and other so-called Health 2.0 initiatives are transforming the health care marketplace to promote better patient outcomes.

Among the examples is the Department of Veterans Affairs' Veterans Health Information Systems and Technology Architecture (VistA), which enables Veterans Affairs' doctors to communicate online to coordinate care for the plan's 3 million members. Use of VistA, Veterans Affairs' officials say, has cut per-patient health care costs by 30 percent because patients are more engaged, care is provided in a timely manner and unnecessary tests and procedures are avoided.

Stephen Miller is an online editor/manager for SHRM.

Related Article—SHRM:

Advocates, Facebook, Fresh Fruit Fridays Promote Wellness at Costco, HR News, September 2010

Managing Diabetes: Incentives and 'Coaches' Improved Health, Lowered Costs, SHRM Online Benefits Discipline, May 2009

Related Resources—External:

Healthcare Performance Management in the Era of "Twitter," HPM Institute, November 2010

The Wisdom of Patients: Health Care Meets Online Social Media, California Healthcare Foundation, October 2008

Quick Links:

SHRM Online Benefits Discipline

SHRM Online Health Care Reform web page

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