MS in the Information Age, Part 1: Be Discerning
Serving as co-administrator for a large MS forum has shown me that, while we live in a world of easy access to information, we may not always be prepared to understand and interpret it.
While I’m not a medical doctor, I do work in the healthcare field and have earned my own credentials. Even I have to look up words and concepts to properly understand them. Unfortunately, for most of us, easy access to medical information via the internet comes with a price.
The cost of living in the Age of Information
Even with seemingly free access to information, we can still encounter these obstacles:
Poor access to primary sources
When accessing original research papers, we can be discouraged by paywalls or special connections to gain access, or by clinical language not meant for the average person to comprehend.
Imperfect science journalism
We rely on the interpretive acuity and analytical ability of science writers when they report new findings; however, these reporters make mistakes, they may present information with a hidden bias, or their editors may push viral headlines over accuracy or relevance.
Reliance on “Dr. Google”
We can also be our own worst enemies. It can be extremely difficult to discern a legitimate source of information from one with a hidden agenda (to sell us something, to motivate us using fear, or to discredit legitimate information in favor of promises for a quick cure).
Media literacy in the Age of Information
How do we best arm ourselves to meet these challenges as MS patients?
How to read and interpret primary sources
This seems like a pretty simple idea, right? Not exactly. If you really want to take on the interpretation of clinical research studies, you will need to do a few things:
Learn the terminology
This might entail keeping a medical terminology handbook on hand for translating key concepts. Need more structure? Take an online class in medical terminology. Either effort could help you deconstruct jargon, and may even teach you how to pronounce some of the more complex terms.
Blogger’s note: To help Multiple Sclerosis News Today readers with this, I will post an “Alphabet of MS Terms” resource twice monthly in 2017, with the “letter A” post launching later this month.
Books about MS, neurology, and autoimmune disorders can help you to break down ideas into palatable chunks. After all, these authors had to do this work themselves in order to write their books.
Choose nonfiction books written by medical professionals or established science writers, which are geared toward patient or general populations for best results.
Look for red flags
When you’re reading primary source material, what you’re really doing is the front-end work of a journalist. Well-trained journalists look for information that can be corroborated (fact checked); they also routinely question assumptions in hope of identifying conflicts of interest or dangerous omissions.
Ask yourself, “Who paid for this study?” Question the statistics and conclusions drawn from very small study samples. Look at the publication date of the study and the “freshness” of its data; has something happened more recently that might better explain — or even debunk — these research findings?
Review supporting research
The citations that follow any clinical research paper are a goldmine of information. If you find a section interesting and want to learn more, take advantage of these references by clicking on or otherwise locating footnote sources.
Also take note of key researchers in the field (and their affiliated facilities) whenever you see their names popping up. You can follow them separately and may even be able to subscribe to regular newsletters highlighting their important work. Following journalists and columnists here in Multiple Sclerosis News Today is a good starting point.
Next week, I’ll spotlight tips for practicing healthy skepticism online searching for information about MS in part 2 of this series.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.