This post is personal. I’m not going to argue the big data promise of predictive medical outcomes for patients vs privacy and sensitivity of an individual’s medical data. I'm not standing on my soapbox to crow about how the future of personalized medicine requires that Healthcare and Lifesciences embrace machine learning/NLP and lead the charge to grow the capabilities of artificial intelligence.
This post is a marvel that our medical records can be organized, controlled, and retrieved *most* of the time. *Most*, but not all. And that's mindblowing.
November 2020: I was about 15 minutes into my first appointment with a new rheumatologist and I wasn’t really “feeling” her … we just couldn’t get a conversational or gestural rhythm going.
Part of that, as it turns out, was because she was reading thru my extensive auto-immune-related medical background as we were speaking. Correction: *she* was speaking *at* me a while pretending I was on mute as I tried to engage and understand. That was until she saw something interesting, and her face showed excitement as it turned fully towards me for the first time… and she exclaimed “WOW, you’ve had a KIDNEY TRANSPLANT?? You look GREAT, considering!!”
Now, remember this was still squarely 2020 so *naturally* my first reaction was to reach for my flanks as if I could tell from sloppy palpation if one of those puppies wasn't mine...my second reaction to spin, momentarily, into an acute panic - I had forgotten to anti-rejection meds for half a decade? Embarrassment now begins to swell up my throat and leak from my eyes; how could I be so careless with such a serious condition. Dr. Rheum couldn't be wrong, right? She is the professional, I can CLEARLY see her staring at a computer screen that contains my electronic medical record, she *has* to be right. Could it just be a similar EMR?
Deep breath. Dial it back to "a normal year" (you can do it! you can remember what it was like before you washed the outside of a potato chip bag). This didn't happen, I've got my (original) kidneys. And of course, I am now confident THAT IS NOT MY RECORD!!!
Me: “Dr. Rheum, uhm, I’m pretty sure I didn’t have a kidney transplant… no, actually, wait, let me be clear, I am POSITIVE I didn’t have a kidney transplant.”
Dr. Rheum: “Hmmm…Ms. Greenberg, it says right here that you had a transplant done at MGH in Dec 2015.”
Me: “Ahhh, okay, I see the problem I think, I had a kidney BIOPSY at MGH in Dec 2015; it was inconclusive which was good news at the time”.
Dr. Rheum: “Oh. Oh, okay. Do you have a copy of the results?
Me, inner monologue: Uh, huh, wha? Do *I* have a copy….I have a reasonably sized house, 3 kids, two home offices, and I like to work on paper. And Dr. Rheum wants (er, likely *needs*) me to find this 6-year-old report among reams of saved paper.
Please, TAKE my data, STORE it, USE it. and KEEP it SECURE so you DON'T LOSE IT!
If you want to SHARE it I’m okay with that too, that is a topic for another day.
Oh, and by the way - guess who has two thumbs, OCD, and a three-dimensional memory? This gal. I found that biopsy report. That puppy was so old it was written on papyrus in ICD-9 code.
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