Don’t Get Your Medical Info From Online Forums

We all do it. Enter an embarrassing medical conundrum into Google, click on one of the countless message board links to see other people going through the same thing, and then immediately assume you’re going to die. The internet is great at feeding that little hypochondriac inside all of us, but should we trust everything we read online?

According to preliminary research from the American Heart Association Quality of Care and Outcomes Research Scientific Sessions 2018, medical information posted on message boards may not be entirely trustworthy.

Researchers investigated two years of anonymous posts on a message board about implanted cardiac defibrillators (ICDs). ICDs are used to treat life-threatening heart rhythm abnormalities using electrical pulses, somewhat similar to pacemakers.

Of the 127 discussions analysed for medical advice, 50% was deemed generally appropriate. 24.4% was inappropriate for most patients, 6.1% was deemed controversial, and 19.5% had insufficient context to back up the advice.

“At a general level, we found information shared in [the online forum] to be something of a mixed bag,” Christopher Knoepke, lead researcher from the University of Colorado, Denver, told Alphr.

“On one hand, we were surprised to find that so much of the advice provided was generally appropriate […] including basic information about what implanted cardioverter defibrillators can do or suggestion of topics to discuss with doctors.”

While general questions about ICDs and cardiovascular disease were fielded with pretty accurate responses, the information on these forums became a bit murky when the researchers started to consider the more complex and personalised advice that users were posting.

“More specific advice, perhaps about how the devices should be programmed, risks associated with procedures, and activities which patients with ICDs should avoid, was more likely to be either incorrect, controversial or failed to provide enough context so that someone could decide whether that advice applies specifically to them,” Knoepke added.

“It seems reasonable to hypothesise that this would apply to information about other medical issues as well, where general information – which isn’t so much subject to clinical nuance and technologic complexity – is more likely to be accurate than information which attempts to provide specific patients with a specific course of action.”

“Unmet educational needs”

With technical devices like ICDs, patients need to have regular follow-up appointments every few months. Given the scale of information associated with them, it’s understandably easy to turn to the internet, as Knoepke noted:

“Since online information is always available and can be reviewed indefinitely, these resources also fill unmet educational needs of patients and their families, including those who were overwhelmed when talking with their doctors, were embarrassed to ask questions, or simply forgot something they talked with the doctor or nurse about and wanted to look it up.”

Medical information provided from other sources is just as widely variable. In a 2010 study, researchers analysed the first 100 Google search results of five common paediatric topics: ‘MMR vaccine and autism’, ‘HIV infection’, ‘breast-feeding and mastitis’, ‘breast-feeding’, ‘infant sleep position’ and ‘management of green vomit’. The researchers found that only 39% of the information was accurate. 11% provided inaccurate information, and 49% did not provide pertinent information. News sites were accurate 55% of the time and sponsored sites were never accurate.

“The discussions occurring on these message boards can provide some good basic information, but in our case, the more complicated and in-depth the advice being provided was, the more likely it was to be problematic,” Knoepke told Alphr.

In an age of questions around false news, it’s probably even more important to make sure patients have the correct information at hand from health professionals, who can direct them to the correct sites.

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