Navigating The Health Information Superhighway
In 2011 , nearly 98 % of participants in a NARCOMS registry survey cited their physicians as their most trusted source of information on MS . At the same time , 59 % said the internet is their first source of information . 1 More recent research suggests that between 53 % and 82 % of people with MS use online resources to search for information about MS . 2
Googling “ multiple sclerosis ” or “ MS ” returns thousands of results . There ’ s no shortage of information , but how do you separate the bad from the good ?
In 2022 , researchers searched YouTube for the keywords “ multiple sclerosis ,” “ multiple sclerosis treatment ,” “ relapsing remitting MS ,” and “ central demyelinating disorder .” 3 Study authors noted that audience engagement is significantly higher for videos that use animation , talk about treatment response , and have radiological images . But assessing for quality , they found that information about MS on YouTube was generally not sufficient , reliable , or useful .
“ It ’ s so easy to go down a rabbit hole online where all of a sudden , opinion is masquerading as fact , which can have really unfortunate — even dangerous — consequences ,” cautions Jon .
For MS advocates , verifying information before sharing it online is an important first step . Here are a few tips for vetting sources :
• Look to reputable nonprofit organizations , such as the National MS Society ( NMSS ), the MS International Federation , and the International Progressive MS Alliance .
• Use other high-quality sources , such as hospitals , universities , and the National Institutes of Health .
• If you ’ re not familiar with a website , check to see who owns it and what their goal is . If you can ’ t figure out who ’ s behind a site , consider it a red flag .
• Look for references or links to original sources and evidence-based research .
• Check the credentials of anyone dispensing medical advice .
• On health information sites , verify that a qualified professional provided medical review .
• Ask your neurologist to recommend trustworthy resources .
It ’ s also important to differentiate between medical information and the personal experiences of people affected by MS . Both are useful , but in very different ways .
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