Friday, 14 June 2013

Reliable Information

Image: Kookaburra. Text: Let me get this straight. You're not a doctor but you know my doctor's wrong, and you know how to cure my condition because you read it on the internet? I'll answer when I stop laughing.There's a lot of information about lupus on the internet.

Some of it's reliable.  Some of it is anything but reliable.

When I trained to be a journalist, I was taught to check my sources.  Not all sources of information are equal, especially when it comes to issues of health.  In fact, one Australian television station was recently in trouble with the broadcasting watchdog for getting this wrong.

You will notice, that when I'm giving you information, not just my opinion or personal experience, I'll actually say what my sources are. That's so you can check for yourself to see how reliable my sources are.

Sometimes, my sources will be as hyperlinks in the text of the post, and sometimes, I'll list them at the end of the post.

So how do you tell, when you're doing your own research, who is reliable?

Firstly, most things issued by government health departments can be considered reliable.  An example would be  that  ".gov" in the url tells you that it's a government site, and the information provided should be reliable, and should also be independent of any commercial influence.

Another group of sources which should be reliable are official lupus organisations.  An example is the Lupus Foundation of America site:  You find this out by going to the site, and reading at the top of the page or the "about" section of the site, to find out who the people producing the information are.  An official lupus organisation will normally have access to experts.

Another group of reliable sources is that of experts in the field.  With regard to lupus, experts would be rheumatologists, or perhaps immunologists.  For example, if you go to, you read that it's written by Dr Shashank Akerkar - a consultant rheumatologist.  Since rheumatologists are specialists who deal with lupus, you can assume the information he gives is reliable.

Those are your most reliable sources for information.

Patient blogs, support pages, etc are lesser sources of information. That doesn't mean they're not good.  It means they are shared experience.  They're not necessarily scientifically tested data.  They're opinion, anecdotes about things that worked for one person but may not necessarily work for anyone else.  Their real value is that we feel less alone when we read that other people are going through similar things to ourselves.  Chronic illness is an isolating thing.  Just knowing that there are people out there who understand makes a huge difference.  These are not a source of medical advice or information.

And the least reliable source of information? Pages that are trying to sell you something.  The page that tells you everything will be better if you buy this super amazing supplement for only $99.99 plus shipping and handling, is going to be giving "information" that's been slanted to make their product look better. The site that says this diet will fix everything (and has no scientific proof to back it up), is just someone's opinion.  And if anyone tells you that you need a product to "boost your immune system", point out to them that your immune system is trying to kill you and you don't need to help it.

But wherever you do your research, remember your primary source of information is still your doctor.  Never change anything in how you treat your lupus (or any other health condition for that matter), without discussing it with your doctor first.

1 comment:

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