Medical Research

So, you’re faced with a medical decision. Or situation. Or whatever. And you want to learn more about it, independently from your doctor. (Why would you want to do this? See related article about Informed Consent over here at Wallypop.)

I’m surprised to learn how many people don’t know where to start with this. Here’s what I do:

1) Ask around. I don’t mean ask your friends, unless your friends have also dealt with whatever it is you’re looking into. I currently belong to a FB group for Kidney Mamas, and if the question is kidney related, I often ask there first. The mamas there will at least have a range of experiences to share, and since they’re from around the country and see different doctors, their doctors will have had different opinions and protocols, as well.  This is where message boards like Mothering.com come in handy, or even just a Google search will usually bring up message board posts for lots of personal experience sharing. (It also brings up a lot of BS from people offering their opinions when they have no business offering opinions. You need to mentally filter out any personal information sharing that is poorly written, that doesn’t use appropriate medical terminology, or that is not based on actual personal experience.)

In my opinion, nothing beats real life experience. Our nephrologist recommended a Gtube for Teddy a few months ago, and I was really on the fence. I understood what she was saying, and I believed her, just… I wanted more information. I’d already been doing reading about appropriate growth in infants with CKF and knew that most end up with a feeding tube, so her suggestion wasn’t a surprise, but even so… I was uncertain. That’s where my fellow kidney mamas came in. I think three people said something to the effect that they’d put it off, but once they got it, they wished they’d done it sooner. That cemented it for me.

That said, one person’s experience does not a rule make. For example, I got ITP (an autoimmune dysfunction related to platelets) from the MMR vaccine – most people do not. So you can take into consideration my experience, but you should know enough to know that it’s the exception, not the rule. How do you find that out?

2) References from the people whose personal experiences you learned from above. You can Google all day, but a few links from the bookmarks folder of someone who’s been where you are now can save you a lot of time. If there’s some sort of online group for whatever you’re researching, start there. (whether it’s an informal group like a Facebook group, or something like the National Kidney Foundation.)

3) General medical websites. WebMD, Mayoclinic.com, even the NIH. Lots of hospitals have very informative articles posted on their websites. You can Google to find them, or start at WebMD.com (or whatever) and use the search function. These websites will usually be biased towards medical solutions, but are still a great source of accurate information.

4) Scholarly publications. I usually turn to scholarly publications when I’m not getting anywhere with the general websites (like when they all say that hydronephrosis is usually mild and not concerning), or when I think I’ve got an argument on my hands. If I’m wanting to do something that a doctor doesn’t want to do, or I don’t want to do what they want, I want to make sure that A) research is on my side and B) I can clearly argue my case. This is where scholarly publications come into play. PubMed is a decent place to start. Google’s Scholarly search: http://scholar.google.com

Scholarly publications, research articles, etc., are only going to help you if you know how to read them. I can’t help you there. I’ve been reading medical research since I can remember and the jargon is part of me.

5) Professional organizations. ACOG (American College of Ob and Gyn), for example, has publicly-available position papers, and you can access some of their members-only position papers through other organizations. Nothing compares to presenting an OB with a position statement from their own professional organization when you’re arguing about something with them. Many of your doctors’ professional organizations have portions of their websites available to the public.

 

To go along with all of the above:

6) Your medical records. Get them. Read them. Google every single word you don’t know. Staring with a thorough understanding of what your file says is the BEST place to start. Because doctors don’t tell you everything.

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