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!