Get your data
This post by Jeff Jarvis reminded me of the importance of getting my data in the process of taking control of my medical experiences. It describes how Xeni Jardin, an editor at Boing Boing, recently described how she asked for and received images from her MRI (after being diagnosed with breast cancer), and when reviewing them, discovered that one set of images was from someone else.
I can only hope that most of the time, those kinds of mistakes don’t happen. However, people make mistakes, so they are going to happen. But attempting to catch mistakes isn’t really the point of getting my data. Feeling empowered about my medical experience is, I think, why it’s worth doing. Even if I’m too overwhelmed to actually look at the data for a while, at least I have it. It’s my body, and all those measurements the doctors are taking of it are, in some sense, mine too. I like being able to do my own tracking of the various numbers that get recorded every year; I like having copies of the pictures of my body that show (so far, anyway) that I am cancer-free following my surgery and treatment in 2010. (Hopefully those pictures I’m getting really are of my body and not someone else’s!) I like getting more educated on what each of the measurements actually means so I can have more meaningful conversations with my doctors. It helps me feel like I make better decisions for myself, and should the time come again when I have to make some very difficult decisions, I will be better prepared to do so, and more confident about the whole process.
My next round of tests is coming up in February. I’ll be asking for copies of everything, as usual. Add it to the pile! And as always, I am grateful to the doctors who help me understand what it all means and are willing to take the time to review it with me. But I wouldn’t expect anything less.
