A few weeks ago one of my daughters came home in a tizzy because her anatomy and physiology teacher had taken the kids' blood pressure and found hers to be abnormally high. "Mom, what's my normal blood pressure?" she demanded.
"Seriously?" I thought to myself. "Is that a fact moms should know off the top of their heads?"
Last she'd been to the doctor was in August, for her annual sports physical. Maybe I would have remembered her blood pressure if the doctor had flagged it as high and in need of watching, but otherwise it would have gone in one ear and out the other. Does that make me a bad mother?
I don't think so, but it did set me off scrambling to see if I could a copy of her sports physical form I filed... somewhere.
At the time I vowed to get more organized about my kids' medical records -- not to mention my own and my husband's. Now that I think about it, it's the pledge I had made to myself in the fall, too, as I had to jump through the medical system's hoops for regaining access to my oldest daughter's medical record to verify an immunization she needed to stay in attendance at school. She's 18, still somewhat of a kid in my eyes but an adult to the medical powers that be and therefore in charge of her own medical records. (You try telling your stressed-out, first-semester freshman that she needs to get her own medical record on top of everything else new in her life.) With no perennial health issues among us, save various allergies, keeping tabs on our medical data has never seemed a high priority, despite the promises to myself.
But last night, I'm pleased to report, I started on the road to getting more organized about our medical data. I got a big kick in the butt as I listened to patient engagement advocate Dave deBronkart -- a.k.a. @ePatientDave -- hammer home the importance of taking ownership of our medical information, and getting engaged in the medical decision-making process. A passionate advocate of participatory medicine, DeBronkart delivered the afternoon keynote speaker at yesterday's SAS Health Care & Life Sciences Executive Conference (for more conference coverage, see More Botox Please: We're Gonna Live 700 Years). DeBronkart, a self-professed data geek and an award-winning marketing analyst, has become a big of a hero among those trying to make medical data more readily accessible to patients. Just watch this video, "Give Me My DaM Data," which he shared with conferences attendees (deBronkart is the older gentleman in the suit jacket):
DeBronkart has an amazing medical story to tell: Blindsided by a stage 4 kidney cancer diagnosis and told he'd likely be dead within 24 weeks, he took to the web, found an online community of patients with the same cancer, learned from the community about a drug that could cure (or kill) him and about a specialist in his area that could treat him with the drug... and several years later he's alive and kicking -- and spreading his message of involvement and data ownership.
As he said yesterday during his keynote, "Look, it's my freakin' data. Let me decide what I want to do with it." For example, after admitting to doing "unnatural things with Excel" (he is a confessed data geek, remember), he showed the audience how he tracked the size of his tumor in a spreadsheet. It's his profound belief, he said, "that everyone performs better when they're informed better."
As another case in point, DeBronkart relayed how his sisters saved his mother from near medical disaster because they were well versed on her medical data. In looking over her medical records as she headed from one facility to another, they noticed that the medical form going along with her specified that she was on medication for hypothyroidism when in fact she was being treated for hyperthyroidism (I may have that backwards, like the medical caregivers, but the fortunate thing is that the family was on top of the medical data). DeBronkart said he can't stress this point enough: "Get all the records you can about your family!"
And so I'm in pursuit of my own family's medical data, which I will have available to me at a second's notice if needed. I've decided not to entrust that to the system any longer. What about you? (Oh, and for the record, my daughter's blood pressure seems to be just fine after all. But I am watching.)Related posts: