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If You're Going to Ask a Message Board, Maybe Ask Your Doctor, Too


Dr. Google runs the risk of confusing patients, but Dr. Message Board also has the potential to misinform.

Few will argue that the access to information and support that the internet provides to patients is a net negative. But much like Dr. Google runs the risk of confusing patients—and maybe turning them into temporary hypochondriacs—Dr. Message Board also has the potential to misinform.

At the American Heart Association’s Quality of Care and Outcomes Research Scientific Sessions 2018 in Arlington, Virginia last week, a team of University of Colorado Denver researchers presented an analysis of online discussion about implanted cardiac defibrillators (ICDs).

ICDs are very common—130,000 of them are planted in American patients each year, and more than 1 million people have them in use at any given time. And according to the study’s lead author, Christopher Knoepke, PhD, people regularly use the internet to learn more about their health and, sometimes, these implanted devices.

The researchers analyzed 2 years’ worth of posts on an anonymous online discussion board dedicated to ICDs, amounting to 127 total discussions. From that 127, 82 dealt with ICD-relevant topics, including cardiovascular disease, device maintenance, and health effects of the devices.

The researchers found that information was factually accurate only half of the time. About 25% of the messages contained inappropriate advice, while they deemed about 6% of all the information to be “controversial.”

The report isn’t to deter patients from using the resources available to them: “The internet is a critical piece of the vast network of information available to patients,” Knoepke said. But decisions about ICD’s are both life-changing and expensive, requiring measured, educated insight. The researchers warn that inaccurate information can be dangerous. “Our findings indicate that patients should be advised that discussions on these online message boards can provide some good, basic information, but more complicated and in-depth advice may be problematic.”

The authors urge clinicians to follow-up with their patients about their information sources, and to caution them about medical information they may read on the internet.

Inaccurate information from open-source web platforms has become a common concern among clinicians today. In late 2017, researchers from East Tennessee State University looked at another increasingly common source of user-generated health info: streaming video. They focused on influenza, and found that even YouTube video content generated by healthcare organizations provided little educational benefit to patients.

YouTube, they concluded, was a “poor source of valid healthcare information.”

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