I almost never get mad. So when I started thinking about building tools to help managing my own health data and I came across something that made me incredibly angry, it was a pretty big deal.
Here’s the crux of the matter: I have blood in my body. I can pay to have that blood taken out of my arm, swished around in some machines, and translated into numbers. This data is mine in the most fundamental sense, quite literally of me, encoding information about the very fiber of my being. But once that data has been generated, I can’t see it. If this was due to some technical problem, some interoperability challenge, I’d be forgiving. But its not. It’s due to a group of doctors who think I can’t handle the truth.
When in 2011 the Obama administration tried to enact regulations to ensure patients direct access to the results of their blood tests, the American Medical Association (AMA) threw a fit, or as they would describe it, “recommended further study on best practices” for giving patients direct access to their lab data. The draft regulation hasn’t been heard from since.
It seems that our friends over at the AMA may have missed something. Something like, say, the past 40 years. As a lot of doctors already recognize, the days when doctors told and patients did are gone. Yes, it’s annoying when we patients ask questions. I know doctors are busy and have to see more patients in less time these days. But I also know that I take better care of myself when I feel in control. I’m less likely to forget to get my prescription filled if I’m convinced the drug will help. I’m more likely to abstain from that piece of bread when I know why it’s bad for me. I promise I’ll even get more out of my doctors appointments if I can see my lab results in advance, take some time to read up on what they mean, and come prepared with questions.
I know some doctors worry that having this information without the benefit of their interpretation might cause me undue anxiety. And they’re right. But these days the information we need to cause us anxiety is just a google away. For a few minutes every few months my health is my doctor’s top priority. Give my lab data to the person who thinks about my well being all the time. Me.