Patients Demand: 'Give Us Our Damned Medical Records'

An interesting story.

(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.

Read the rest of the story here.

This is just ridiculous. I mean the law clearly states that you have the RIGHT to your medical charts and documents as soon as you ask for them. This is a big problem. As stated in the article, lack of information kills.

I find it really difficult to understand why the records keeping in the states has not moved to an all digital format. As the owner of a few businesses, it is imperative that I am able to quickly access all the vital information required to run an efficient organization. Hospitals seem to have a big issue with that.

So what are your thoughts ATS?

~Keeper

LOL I'm an RN and all I can do is laugh. As a member of healthcare in this country all I can say is if the average hospital was run like a business at the behest of free market capitalism MOST would go bankrupt. Many hospitals rely on their "foundations" to survive.

Anyways, if the average person saw just how disorganized and inefficient most hospitals are they'd be perplexed and awestruck. You've have doctors still HANDWRITING progress notes and entering orders onto paper carbon copies. Part of the problem is trying to get doctors who are completely stuck in their outdated ways to change their habits. My hospital tried to go to computerized physician order entry over a year ago. And doctors still aren't on board. It's ridiculous.

You should see the average patient chart at a hospital. It's a complete and utter disaster. It's a three holed punch of paper, disorganized, loosely put together, missing key pieces of information etc. This "chart" goes to medical records where everything is scanned in and computerized. IT's VERY inefficient and a complete waste of time. WHY AREN'T DOCTORS USING COMPUTERS MORE? Because they are stuck in their ways and do whatever the hell they want to do. That's why. Nursing is probably one of the most efficient aspects of healthcare. EVERYTHING they do is computerized in most hospitals nowadays. And doctor's handwriting is TERRIBLE!

reply to post by Zosynspiracy


My husband is a Pediatrician and he tells me these horror stories all the time, so I definetly feel your pain.

In his office and our hospital in Canada at least everything has been made digital somewhat. There are still the regular three hole punch charts however the hospital is working on getting PDA's to handle such informatino would be carried around by physicians or nursing staff to make things more accurate.

~Keeper

Part of the reason it takes so long to get medical records is that they have to be transcribed into somewhat understandable English, because people like me write in illegible Latin abbrevations, the standard for medicine.

Also, some hospitals require that a mediator sit with the patient for a session when they receive their records, in order to explain anything the patient has questions about. This is due to liability, and because patients tend to sue over anything they don't understand, thinking that if they don't understand it, it must be an unnecessary or incorrect treatment.

Pretty sure Obama funded the digital revolution of medical records.

Gotta give credit where it's due.

reply to post by Jedi411


Yup, I've heard him talk about it in a speech during the campaign and then afterwards in one of his first speeches. It would most likely be something included in the Health Care bill I would think.

~Keeper

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 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).

The problem is that when people are given their raw medical records, they tend to file frivolous suits. Of course, most of the suits never see a court room, but they still require hospitals and doctors fo keep costly lawyers on retainer, ultimately causing the price of healthcare to rise. This is why tort reform is such a hot topic in healthcare debate.

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. If I had my way, I would give the patient their record myself, with the understanding that they cannot file a suit against me for anything other than negligent or improper care. The problem is, people like to file suits all the time for thigns that aren't worth suing over, yet I still have to pay lawyer's fees.

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.

Things are moving that direction with electronic medical records becoming more common in larger hospitals. The records are still transcribed, so you aren't seeing word-for-word what was written in them, but you are able to see treatments, comments from doctors and nurses, and so on.

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.

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. I feel like I am being looked after now which is a huge relief.

[edit on 18-1-2010 by riley]

Originally posted by Jedi411
Pretty sure Obama funded the digital revolution of medical records.

Gotta give credit where it's due.

Yes, now they're in impenetrable computers attached to the internet, where NO ONE can hack into them.

Which part of electronic medical records sounds good to people?

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).

Actually, character and demeanor are required portions of any SOAP (subjective, objective, assessment, plan) note that every doctor, regardless of speciality, completes on a patient anytime a diagnostic is made. Also, writing that a patient is noncompliant doesn't necessarily cause another doctor to infer anything about the patient. It simple tells them that this patient may require a bit more time or that the doctor should have a couple of options or alternative therapies in mind when offering treatment. I haven't heard of any doctor "taking my word for it" about ANYTHING on a patient's chart when I refer. That's irresponsible and legally actionable medical practice.

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.

It never crossed your mind that they agreed with the first opinion?

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).

A doctor CAN perform any test you or they like, assuming the patient is willing to pay for it out of pocket. Most doctors are reluctant to do random and extraneous tests because insurance companies will not pay for it, not because the doctor is out to get you.

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 doctors are humans, too. Some diseases are remarkably hard to detect. I'm very glad you were able to get the tests taken care of and start therapy. However, I would be very curious as to whether you went to several family practitioners, or if you went to a specialist? FPs are usually reluctant to order complex blood or enzyme assays, as the results are out of their scope of practice. Did you ever ask your FP for a referral to a specialist?

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.

Did you try the treatment that doctor offered? Also, have you appealed the doctor's entry into your records and filed a suit? Mischaracterization of patient information is, at least in America (not sure how it shakes out in Aus) a federal crime and possibly license revokation. Still, one bad apple doesn't spoil the bunch.

Getting complaints from other doctors is nothing compared to risking the health of patients because you have made negative personal judgments about them.

But NOT telling a doctor about a patient being aggressive, noncompliant, or generally nasty isn't fair to your colleagues. By not informing other doctors, you are basically asking them to walk into a battle unarmed. If I know ahead of time that a patient has several instances of being noncompliant, I'm more likely to look into and offer several alternative, though less effective, treatments. Giving the patient the illusion of control over their treatments tends to calm them down, as most noncompliance tends to come from nervousness, social anxiety, or general mistrust.

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.

Again, I don't know what it's like in Australia, but in America, you do not have to go through FOIA. You have to file with the hospital or clinics registrar, and they will typically provide you with either a print or digital copy of your records within a couple of days, if not that day.

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.

It's called "combative patient appeasement" and we all learn it in medical school. If you have a hsitory of stonewalling us, then you ask for something that won't hurt you, then why nto just let you have it so you'll be happy and more likely to follow our treatment? I had a patient demanding a full blood work-up because she was DETERMINED she had that fictitious disease "Moregellon's". Getting the tests certainly wouldn't hurt her, of course, and if I went ahead with it, she would think we were playing on the same team. So, I ordered a couple cheap blood tests (I think it aded a total of $20 on her bill), and then told her to use hydrocortisone. I knew it was just contact dermatitis, but she went home thinking she "showed THAT doctor), meanwhile she got proper treatment without any fighting on my part.


[edit on 1/18/2010 by VneZonyDostupa]

Originally posted by leftystrat

Which part of electronic medical records sounds good to people?

Probably the part where most computers containing medical records are connected to a hospital-specific inTRAnet, not inTERnet. Big difference.

I like the VA medical system because i can walk into any VA hospital and all they have to do is punch y name and last 4 numbers of my SS# into there computer system and pull up my records.

No needless test or other BS just because you change hospitals or travel around the country.

I worked as a EMT and know all about the bogus shorthand "notes" that some doctors put on peoples records.

I have seen cases of people listed by a couple doctor as drug addicts because they smoked cigarettes.

This could cause these people needless pain and suffering if they needed narcotics after surgery or while recovering from injuries.

This also has happened to people with disorders like fibromyalgia and doctors putting notes on there records that they are just drug seekers.

some of the doctor shorthand i have seen.
4F - Fair, fat, female and forty OR fat, forty-ish, flatulent female
AALFD - Another A**hole Looking For Drugs.
Acute Pneumoencephalopathy - airhead
AHF - Acute Hissy Fit
BFH - Brat From Hell
BTSOOM - Beats The Sh*t Out Of Me
BUNDY - But Unfortunately Not Dead Yet
BVA - Breathing Valuable Air
Calcified Penisitis Morbidium - male patient whose ailment is due to excessive or unprotected sex

Category 6 Patient - Triage is Cat 1 (major) to Cat 5 (minor) so Cat 6 means a timewaster
CHAOS - Chronic Hurts All Over Syndrome (PTSD/Fibromyalgia, etc.)
CLL - chronic Low Life
COPD - Chronic Old Persons Disease (unwell, no specific cause)
Crock - Hypochondriac.
DACB - (US) Drunk As Cooter Brown
DMFNFL - Dumb mother f*cker, not fit to live
DSB - Drug-Seeking Behaviour
GOMER - Get Out of My Emergency Room;
Hippo - Hypochondriac or depressive
JPS - Just Plain Stupid (self induced injury involving lack of common sense)
LMC - Low marble count (low IQ)
MARPs - Mind Altering Recreational Pharmaceuticals
MU Pain - Made Up pain
OPD - Obnoxious Personality Disorder
PIA - Pain in the ass
Plumboscillation - swinging the lead (malingering)
PPA - Practicing Professional Alcoholic
SBOD - Stupid bitch/bastard on drugs
SYB - Save Your Breath (for patients who don't take advice)
TEETH - Tried Everything Else, Try Homeopathy
TWSAM - Trash Will Survive And Multiply
ULPP - Unlicensed Pharmaceutical Provider (drug dealer)
VIP - Very intoxicated person
WAFTAM - ("woff-tam"): Waste Of F***Ing Time And Money

Originally posted by ANNED

some of the doctor shorthand i have seen.
4F - Fair, fat, female and forty OR fat, forty-ish, flatulent female

In all fairness, this is actually a medical mneumonic for gallstone risk. The 4Fs are "fat fertile female over forty". If a woman is a 3-4F and has abdominal pain, look for gallstones.

As for the others, I've only seen a few, and only on internal notes between residents. If a patient is a known drug-seeker, I'll note it in the chart, sure. If they are arrogant, rude, and aggressive, I'll note that, too. We have to, it's part of the "appearance and demeanor" note, which factors into psych diagnosis. You'd be surprised how often a patient's demeanor gives you insight into their current disease.

reply to post by ANNED


As an RN in a major level one trauma center and having looked over THOUSANDS of medical charts, MD notes, nursing notes, progress notes, yadda yadda............I've NEVER seen ANY of those abbreviations. Sounds like urban legend to me.

Like I said before in MOST US hospitals doctors are still hand writing orders on paper as well as their progress notes. It's completely inefficient and disorganized.

reply to post by Zosynspiracy


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.

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.

From my experience working with and being a doctor, it's rarely about being there for the money, and more about the fact that every patient feels their problem is worth more time than the problem the next patient has. That's not to say being dismissive of a patient's issues is proper, not at all. You just have to keep in perspective that in an average day, I will see about fifteen to twenty patients, all with conditions at varying degrees of severity. Your skin condition might be the most pressing issue in YOUR life right now, but I'm probably more concerned about the lady one room over whose infection has stopped responding to therapy and is now causing fluid to build up in her lungs.

It is very, very rare that I run across a physician who is doing it just "for the money", and when I do, they are usually the ultra-specialists (derm, radiology, orthopaedics, for example). Medicine isn't as profitable as it used to be, and it certainly isn't as profitable as people here make it out to be. I made less than minimum wage for four years out of school (120ish hours per week at a salary of $37,000 per year). After that, my salary went up to about $175,000 as an internist, while still working 80 hours per week just in the hospital, not to mention hours at home dictating/writing notes, completing cases, etc..

[edit on 1/19/2010 by VneZonyDostupa]

The patients wife has no right to access the patients medical records unless he signed that she is allowed to access them. It would be a Hippa Violation if they gave her the records without his consent. Do we know whether he signed paperwork to allow access to his records in this particular incident? Was the Hospital refusing to turn over records due to a refusal to pay? A patient has the right to see what it written in his records, but he does not have to right to take them from the hospital to another location. As a matter of fact, the hospital is required to retain his charts for 7 years under federal law.

I suspect that there is something to this story that the family is leaving out yet.

reply to post by VneZonyDostupa


Apologies for lumping you all into one group. My dealings have been mostly with specialists.

Originally posted by DAVID64
reply to post by VneZonyDostupa

 

Apologies for lumping you all into one group. My dealings have been mostly with specialists.

No worries =) I absolutely agree that specialists can be a royal pain in the butt. They tend to nickel and dime you as much as they can, because they are able to bill for just about anything under current insurance reimbursement. Not fun.