Today's internet users have to take ownership of their responsibility in assessing their travels through informational sites. This obligation remains whether one is seeking medical information, historical data, or current event coverage. Every website has a webmaster, an editor or program director who selects what will be uploaded to their page(s). All have their own agendas.There are plenty of search engines available to help you find a plethora of sites dealing with the topic you are researching: Bing, Google, Yahoo, and more. Innumerable data bases exist, and consumers must learn how to create a library of trust.
What are the keys to unlocking this treasure house of information? Begin with the url (the web address) and start at the end: most will end with .com, .org, .net, .gov, .edu here in the United States. Students are taught early to expect a .com site to be one sponsored by someone with an agenda, true or not, and .net as being like a co-op of users with a common interest. Urls with the suffix .org are most often linked with organizations like museums or other private institutions that have a reputation to maintain. Those with.gov are government sponsored which, depending on one's political outlook, may be a positive or a negative. And I learned soon enough as a teacher leading young adolescents through research projects online that the suffix .edu can be widely variable: .edu may mean it is hosted by a college publishing highly qualified, scholarly articles, or it may be a classroom site hosted by an elementary school and showcasing third grade student compositions with factual errors, neatly typed.
Medical issues are also addressed in a wide range of sites, and so may be no more reliable than one patient's personal journal, complete with singular bias, or a site filled with many chatters sharing their experiences and differing amongst each other in their replies. These sites may be both confusing and misleading to a person recently diagnosed just trying to 'get a handle' on the terminology and stages of a condition. Other websites may be owned and thus influenced by the large pharmaceutical companies producing and marketing specific solutions at great expense toward greater profits. Most medical information sites will responsibly remind readers to always check with their own doctors before accepting any advice or practices sponsored by the site.
I've learned a great deal about multiple sclerosis by reading at the National Institute of Health's site. I've also learned a lot of vocabulary, and gained second hand knowledge of many medications, at the NMSS message boards; I'm careful, though, to remind myself that they are personal stories that differ widely in viewpoint and in credibility.
Many doctors don't want to hear what you've learned at a website, reputable or not. They may be offended that in reading there you are less dependent on their professional knowledge. Yet they haven't the time to spend educating you about your condition at the level of detail that you may wish to be educated. Nor do they expect you to take medical courses at a university. This lack of professional information sharing within a doctor's tight schedule is what leads to patient frustration and reaching out to the internet for further information.
There are new sites appearing almost every day on every medical condition. Doctors haven't the time nor the interest in screening those sites for their patients. But they may have experience and knowledge of some sites that they believe are reputable, and it doesn't hurt to ask for a list that you can turn to when the doctor is not available.
The articles below are sites that I have found trustworthy, and have shared at my Facebook page for others looking for online resources. But I, too, must ask you to always check with your own medical team before choosing to follow a practice learned online.
And I'll remind you to go to my online store, or CreateSpace, or Smashwords, for a 50% discount on my book, Multiple Sclerosis, an Enigma. The links will be listed below the related articles.
I tend to add www.patientlikeme.com to the list of reputable sites, but only if one is looking for drug information or to know whether a condition currently being experienced or feared is common. It's a site which tracks information voluntarily provided by patients about what drugs they take, for how long, why they stopped and how effective the drug was at treating the symptoms. It also allows patients to track their symptoms and disease progression. The forums are what one would expect, a useful place for advice and pick-me-ups, but completely anecdotal from a "will this work" perspective. I prefer their look up of drug info so I can see there were x number of people taking miracle pill A, but all of them stopped within 2 months because it didn't work. For what it's worth, I just print off information from their tracking data to take to my doctors appointments as it is a nice summary.
ReplyDeleteThanks, Geoff. I forgot that one! I've put it at the top of the list.
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