the condition itself isn't so bad, but nevertheless this made me so angry! not spotting this problem was a failure on my part, my parents part, the medical professionals i have seen all my life, as well as the medical system itself. i was really down and angry, and got into a bit of an argument with my sister, who's about to graduate from medical school.
here are three areas where i have problems with the medical establishments i've been involved with (canadian and american)
- outcome evaluation
- patient training
- easy access to entire medical history, key diagnoses, chronic issues, etc..
outcome evaluation: i told my sister that i really felt that most of the time my doctors didn't actually evaluate the outcome of the treatment they prescribed for me. she told me that checking outcomes is huge in the medical profession, and gets a lot of emphasis in training. but my typical experience with outcome evaluation is that the doctor prescribes something, and if the patient doesn't reappear, they assume that everything worked out. maybe they don't even assume that, since doctors are so busy that it's hard to schedule time for everything. however, i feel that diagnosis gets the most time and attention, and outcome evaluation just seems like this fuzzy area. i'd love to know how outcomes are supposed to be tracked, and how good the profession is doing, if anyone has comments.
patient training: i didn't even know that the problems i was having were in fact problems! and even today when i feel some small ailment i don't always have a good language for describing it, and i'm sometimes not diligent enough to remember to track it, so that when i do see the doctor again, i remember to mention it. i imagine a few hours of training would go a long way in helping me do a better job of gauging my healthiness, and might help me to better understand when it makes sense to see a doctor. i've never heard of such training, anywhere.
medical history: coming from the area of computer science, and especially google, i'm astounded at the awful disorganization of my medical records. i've moved around a lot, and seen specialists from time to time, and so i have medical records in any number of places. even when i get one office to fax their records to another office, i've found it unlikely that the new doctor will actually take more than a cursory glance at these new records. instead, they will in fact ask me to identify what's important via questions and filling out a long form. sure, i have some ideas, of what's important, but really, this is laughable!
there are probably some excellent observations embedded deep within those records that will never again see the light of day. for instance, i had wrist problems in college and so had treatment there. some things worked, some things didn't. i don't even remember all the things we tried. but it won't be easy for me to discover what worked for me and what didn't. there are likely so many interesting and useful things pertaining to my health that can be gleaned from those records. but they aren't in any format that makes this easy.
i was recently reading a paper on a usb flash drive that is the soul of your computer -- all your data and programs. you could go around to another computer, plug in, and voila, it's your computing environment. it's called a soulpad. i want that for my medical records. i want my medical records securely stored on a flash drive that i can lug around with me. i can go into any doctor's office, plug it in to their computer, and the doctor can quickly grok my entire history, with hilights and everything. furthermore, when the doctor is done, i can get her report uploaded to my little medical flash drive before i leave the office. i am actually thinking of gathering all my medical records and going through a somewhat laborious process of making such a device.
perhaps one day all our medical records will be securely stored online and we'll be able to easily grant access and doctors will have excellent tools to understand medical histories and make highly informed diagnoses and recommendations that pool together the collected work of many diagnoses and analyses on innumerable patients. until then, having all my medical records in my hands, easily accessible to me and perhaps my health professionals is within reach, and hopefully it happens soon!
2 comments:
so, i think you make some interesting points. I agree that the state of medical records today is ridiculous (of course, i also come from Google and perhaps expect more). Especially for people like us who move around a lot, vs. those who live in one place (with 1-2 doctors) their entire lives.
But I think you're pretty wrong on your other two points. There's plenty of websites where you can go and plug in your symptoms and read about diseases. There are checklists for things like depression and the flu. Have you really looked for these types of things? Also, you should see your doctor yearly for a checkup, i think. That would be a good time to bring these things up.
And I don't think it's a doctor's responsiblity to run after you and nag you about how your treatment worked out, just as its not their responsiblity to ping you every six months to see if anything is wrong. Perhaps if you were undergoing some brand new treatment for cancer, but for most things it's not a life-or-death issue and the doctor just has too much to do :( maybe in swanky new medical facilities the nurses will check up on you. who knows. but you should be able to do this yourself.
first: i don't have any super-serious problem, and i'm not even sure it is a problem, but i'll be seeing doctors about it. so thanks for the concern from people that i've gotten here on the blog and through email.
now as to neha's point that i'm pretty wrong on my points about personal care and outcome evaluation: i disagree. sure, there's webmd etc.. but my point is this: sometimes we get ailments that we just get used to, adapt to, or don't even know that they're ailments! these checklists that you speak of, these are all ad hoc methods obliquely getting to my point, that we as individuals who should be concerned about our health should have some simple training in how to understand and react to our medical problems. it seems you think we all have that, and just need to look things up. perhaps some of us do have that ability, but some of us don't.
second, outcome evaluation. i'm not asking my doctor to check up on me every few months, and i in fact do see my doctor every year. but even when i go see my doctor the next year, they don't ask me about the previous ailments! maybe my doctors aren't very good doctors! what i'd like is to know how outcome evaluation is done, and what i should expect from my doctor on this front.
finally, as to bea's points.. it's good to hear that congress is doing something about this. i think your worries about carrying around your medical records are straw-men. for instance, laws could be enacted that govern the access of third parties to your data that require strong (ie not tacit) consent. furthermore, doctors have always been bound by a standard of ethics that requires them to keep my records private. so while this device could incorporate levels of privacy (ie i don't need to show this particular doctor my sexual history) i think we really need to trust our doctors. they are working with our bodies! we need to trust them.
on a final note, i'd like to point out that right now my medical records are guarded in a horrible way. for instance, numerous times i've just called up a medical office, told them my name, told them i'm seeing a new doctor, and given them a fax number. that's it! and they've sent the items! they do this because it works and probably the instances of fraud are low (and it's illegal too, which is probably a strong incentive not to go looking through medical records that you don't have access to).
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