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.)
"It also opens the door to everthing a doctor did not do or could have done (whether appropiate or not) and Dr.'s. will have to justify their every step. "
I think that is also a major reason why hospitals should be reluctant to issue records to the patients. However, if a doctor messes up, patients' relatives should and do reserve a right to extract and verify medical records and the rationale behind certain treatments.
"I would like to have the data handy to be at all times in case it's needed for an emergency. So, I woud store it locally and make paper copies, for example, rather than having to rely on access to the health system's files if I need the data quickly."
Yes. In my state, there is a practice of handing over a hard file to the patient when he gets released; obviously they charge for it too. This way the patient always has access to the data for referring it to any other hospital esp in case of emergency. Would like to know of the practice in your state ?
"meaning, one medical provider presents the data in this way, another medical provider presents the same data in a completely different way. So it's not just having access but being able to get that access in a meaningful way."
For that to happen it is the regulatory authorities in the field of medicine that should define the standards in which patients' records are generated and stored so patient does not become dependant on a hospital just because the data isn't easily comprehended by other hospitals. I'l be surprised if there is such lack of standardization.
@Noreen the forms ask for a lot more than the vaccine records, and that does bother me to some extent. A lot of that is personal information that has no bearing on a possible risk of contagion to other kids. They also ask for the doctors to sign off on whether or not the child has restrictions with respect to physical activity, and I can see the school or camp insisting on having the word of the doctor for that rather than the parent's assurance. BTW it's all on only a page or two, so the fee has nothing to do with printing costs. I think that they just feel they are entitled to charge it for the time the doctor or assistant has to spend on the paperwork.
I am now in NY. It was in NJ that we were charged $10 per record by the pediatrician's office. Doctors want official records rather than parental copies of immunization records, so we had to pay. We asked a medical advocate about it, though she was outraged by the very idea, there was no egal recourse. Apparently. the law allowed them to charge up to $10, so they did. This was not nearly as outrageous to me, though, as the doctor who gamed the insurance system to get additional office visit payments on top of the standard set amount of prenatal care by only entering a pregnancy diagnosis after 3 visits, each billed on its own.
In NYS, the law allows physicians and institutions to charge no more than 75 cents a page, plus postage, for paper copies of medical records. Physicians may charge the actual reproduction costs for radiographic materials, such as X-rays or MRI films. A provider may not impose a charge for original mammogram films, but may charge postage. However, an individual cannot be denied access to information solely because he or she is unable to pay.
So if the doctor is in NYS, Ariella, ask to see your child's medicsl records -- and snap images of any pertinent pages - like vaccine records -- with your phone.
Attach them to the school form and simply wrote "see attached" where it asks for the physican signature
@tinym well, we have no choice, and they know it. But they probably would claim it is just to prevent people from wasting their time with unnecessary forms. They don't otherwise nickel and dime in that way. When they outsourced their billing, the person who handled that always put in for a second copayment for the hearing and vision screening. That bothered me because it really was part of the checkup, and those who wear glasses still had to go to an eye doctor to get their prescriptions set. But others were also not happy with the service and the office switched back to billing in-house.
@Ariella $5 per form!? That's outrageous! As you know, I work for a commercial printer that also manages machines & supplies for law offices. $5 for per page isn't reasonable even for a doctor's office. Lawyers are charging less per printed page...
Just today my husband hot a call from his physican's office, who gave him a login for a site where he can not only see most recent test results but past test results - and then graph them over time. It's a wonderful way for someone with a chronic condition like diabetes or high cholesterol to compare the state of his health.
@DavosCollective -- excellent points. I absolutely agree domain knowledge is required for truly understanding personal medical data. But by all means I would say doing your research and forming some of your own opinions as to how you might proceed is a good idea. But the key is calling on those who have domain knowledge for their expert opinion. That should be your own doctor, specialists, etc. Emotions are hard to control, as you say, no matter how much data you can cull through and absorb. Unbiased sources can help counteract the emotional affects.
As for the guardianship of medical data... I like your idea that parents share their own medical data as an example for their children. I'd add a caveat, though: This should be age dependent, as well as maturity dependent, especially if there are health risks in that data.
Lastly, thanks for joining in the conversation here!