Researchers: Online ICD message board littered with inaccuracies

Only half of medical advice on an online message board dedicated to implanted cardiac defibrillators (ICDs) appears to be accurate, according to preliminary research presented April 7 at the American Heart Association’s Quality of Care and Outcomes Research Scientific Sessions 2018.

In addition, 25 percent of the messages contained inappropriate advice, while 6 percent of advice was deemed “controversial.” Lead investigator Christopher Knoepke, PhD, and colleagues arrived at these findings after analyzing two years of messages on an anonymous online board about ICDs. They studied 127 discussions, including 82 that pertained to medical advice about cardiovascular disease, ICD programming and maintenance, physical activity restrictions and management of other health conditions.

“The internet is a critical piece of the vast network of information available to patients, as Americans use the internet to understand their health all the time,” Knoepke, an instructor of cardiology at the University of Colorado Denver, said in a press release. “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 suggested clinicians follow up with their patients to make sure they are receiving accurate information outside of communicating with their doctors. Considering the ubiquity of online advice and the complexity of managing a patient with an ICD, Knoepke said misinformation could easily become dangerous.  

Between one and two million people in the U.S. live with ICDs, according to the press release, and 130,000 new devices are implanted every year.

“Clinicians should caution patients it’s impossible for anyone not familiar with his or her case and full medical history to help put information into context for their individual patient needs,” Knoepke said.