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(CNN) -- For five days as her husband lay in his hospital bed suffering from kidney cancer, Regina Holliday begged doctors and nurses for his medical records, and for five days she never received them.
On the sixth day, her husband needed to be transferred to another hospital -- without his complete medical records.
"When Fred arrived at the second hospital, they couldn't give him any pain medication because they didn't know what drugs he already had in his system, and they didn't want to overdose him," says Holliday, who lives in Washington. "For six hours he was in pain, panicking, while I ran back to the first hospital and got the rest of the records."
Despite a federal law requiring hospitals and doctors to release medical records to patients who ask for them, patients are reporting they have a hard time accessing them leading to complications like the ones the Holliday family experienced.
'What part of "Give us our damn data" do you not understand?'
Dave deBronkart, co-chairman of the Society for Participatory Medicine, put it this way in a recent blog post: "What part of 'Give us our damn data' do you not understand?"
While there are no statistics on how many patients have trouble accessing their own records, there have been "repeated" complaints to the Department of Health and Human Services, according to a senior health information privacy specialist at the department's Office for Civil Rights, which enforces the federal law that gives patients access to their records.
Originally posted by Tippys Dad
The point isn't explaining the records to the patient or even making them legible. The point is this: OUR MEDICAL RECORDS BELONG TO US. If I want them explained to me, I'll ask. From personal experience, I know hospitals will "cleanse" records before giving them to patients to avoid them reading terms like "noncompliant" or "frequent flyer" (a person who spends too much time tying up staff over their obsessions).
Maybe the answer will be to encrypt all records online and then give each person a pin number. I know we would regret this when the aliens attack or the sun goes crazy - and we lose the Internet - but its a start.
Originally posted by VneZonyDostupa
If you are a noncompliant patient, you better believe I'm going to note it. I have to, ethically. If I don't note that in a patient's file, and then I refer the patient to another doctor, that doctor can have complaints filed against me for not informing them of the patients disposition and general appearance/well-being.
Originally posted by Jedi411
Pretty sure Obama funded the digital revolution of medical records.
Gotta give credit where it's due.
Originally posted by riley
I have had this kind of thing written about me several times.. problem is if you write things that imply a patient is a hypochondriac or non compliant; the next doctor takes your word for it when you may have assumed incorrectly. Your job is to diagnose and to treat illness not to access a patients charactor (unless you are a psychiartrist).
I spent about ten years looking for what was wrong with me.. not only having to fight the disease but fighting the charactor missinformation written in my records. I could not find a doctor to give me a genuine 2nd or 3rd opinion as they'd read what had been written about me previously, take all my opinions with a gran of salt and dismiss them.
I almost ended up dropping dead and finnally had to order a doctor to do blood tests and MRIs (which in aus they are legally obliged to do on request).
I knew tests for her to do as I had to study for myself as no doctor would help me. My point is if they had've believed me in the first place my disease would not have advanced so far and I could've had it treated earlier with less permament damage. Why wasn't it?
because some ignorant doctor couldn't find out what was wrong with me and instead of recognising his own failings and referring me to a specialist he arrogently decided it was all in my head and wrote it down for all future doctors to read.
Getting complaints from other doctors is nothing compared to risking the health of patients because you have made negative personal judgments about them.
I had actually asked for my records and I got told "You have to go through freedom of information". It's not really freedom of information if you have to go through a tangle of red tape just to get at it. It is far easier just to sneak a peak when they leave the room.
BTW. Doctors are really nice to me now and I do not get the impression that they think I'm full of it. I say something they usually follow it through.
Originally posted by leftystrat
Which part of electronic medical records sounds good to people?
Originally posted by ANNED
some of the doctor shorthand i have seen.
4F - Fair, fat, female and forty OR fat, forty-ish, flatulent female
My wife is an R.N. and the hospital she works at has a computerized system that has a laptop type terminal in each room. When they give meds, blood, chemo [she's an oncology nurse] it is entered in their records on the spot and when doctors make rounds, if there is any changes in orders, they too must enter them at the time. They also keep paper records and the docs must enter the orders on those before they leave the floor. She says it makes for pissed docs, but very good record keeping. In my extensive experience with doctors [as a patient] their ego needs deflating quite often. If they are there to help people, why do they treat us like inferiors? Could it be they are there mo$tly for the money? Nah, COULDN'T be that.
Originally posted by DAVID64
reply to post by VneZonyDostupa
Apologies for lumping you all into one group. My dealings have been mostly with specialists.