Most Doctors Don't Think Patients Need Full Access To Med Records 659
Lucas123 writes "While electronic medical records (EMR) may contain your health information, most physicians think you should only be able to add information to them, not get access to all of the contents. A survey released this week of 3,700 physicians in eight countries found that only 31% of them believe patients should have full access to their medical record; 65% believe patients should have only limited access. Four percent said patients should have no access at all. The findings were consistent among doctors surveyed in eight countries: Australia, Canada, England, France, Germany, Singapore, Spain and the United States."
Re:Conspiracy! (Score:5, Informative)
I worked in the medical industry, handling medical data. This is exactly what they don't want you to see.
Patient records are riddled with notes intended only for internal use. To a doctor, it's nothing special that you suffered explosive diarrhea in the middle of the hospital elevator - that happens once a week, and it could be medically important. To a patient, that's a terribly embarrassing episode that shouldn't be in records, and even considering storing such a thing is grounds for a lawsuit. That lawsuit would be argued in front of people outside a hospital setting, who would be biased in favor of the patient. In front of a hospital ethics board, tthe incident is just another bad day for the janitor.
To use the traditional car analogy, hospitals are much like body shops. You really don't need to know every point that was inspected, every noise source that was considered, or the internal notes from the mechanic about how you question every repair so he should make sure to only finish work on days the manager's available. Most of the information is obvious to someone knowledgable, useless to someone who knows nothing, and ammunition for someone who knows just enough to be dangerous.
On the other hand, what does the patient need to see? Doctors know that old records are unreliable, so history beyond a few years old doesn't really matter if it's slightly inaccurate. Current treatment is usually handled by a single primary doctor, who knows what makes sense for a particular patient, so inaccuracies there don't matter either.
Sure, it's information about the patient, but giving out all the details just causes more trouble than good.
Re:Conspiracy! (Score:5, Informative)
My knee-jerk reaction to this is of course "there's NO good reason to withhold my medical information from me!", which was only made worse by the surprising statistics of doctors that wanted to keep it hidden from my view. But you raise some very good points.
Perhaps what's needed here is a two-section medical record. Things that should be shared with the patient, (which should be the default behavior) and things that should NOT be shared with them, for their own benefit. The patient should not be able to determine if the "not to share" section contains information or not.
But as for the 2nd of your examples, yes a hidden feature is abusable. But this is your DOCTOR we're talking about. They are in a position of trust. If you don't trust your doctor, you need to find a new one. If you're a doctor and you've proven yourself untrustworthy, you need to be delicensed. It should be safe to assume you can trust your doctor. Given that, they should be allowed to selectively hide information from you for your benefit.
Like the old saying goes, there are two people in life you should never lie to: your doctor, and your lawyer. Because it's their exclusive job to represent and protect your best interest. And you need to be able to completely trust them both, because your health and your freedom are on the line, and they're the ones you're relying on to protect that.
Re:Information != Knowledge (Score:5, Informative)
With my ex-wife, we only managed to get a (now-multiply-confirrmed) diagnosis of her inherent genetic condition after 30 years of misdiagnosis by dozens of doctors. With the help of Google. Yes, I'm sure lots of people waste their time and it's a haven for hypochondriacs but it's also an invaluable resource when doctors are as overworked/lazy as they are.
Her condition is JHS - joint hypermobility syndrome (also called HMS) that can come from over-extending joints (e.g. ballet dancers, gymnasts) or - in her case - from a genetic predisposition to a collagen deficiency. It was almost unheard of until a decade of so ago (and I've since seen another diagnosis of it in the school I work for) and there is little research on it - it's one UK doctor's pet research project, but by all accounts he's a bit of an arsehole.
It's misdiagnosed by most doctors as arthritis because the chronic joint pain associated with it is easier to write off as that than anything else (even in 20-30 year olds). In fact, it's the exact opposite - sufferers can do the splits and bend over backwards to rival the best contortionists but have chronic pain, whereas arthritis LIMITS joints movement and have chronic pain.
There's a simple ten-point test that's taken as official diagnosis, one point if you can place your hands flat on the floor without bending your knees, for example. Everyone in the world scores about 2-3. Flexible people can score 3-5. JHS sufferers score 8-10. My ex- scored 10 and always will, even when she's 80. It's the prime diagnostic for it, as they don't even have isolated genetic tests for it yet.
The process to find out what the condition was (from just 30 years of constant arthritis diagnoses and treatments to help loosen joints, etc.) was:
a) I had to explain to her that normal people AREN'T in pain 24 hours a day (when you live with it all day, every day, you just assume everyone else does but keeps quiet and soldiers on) and that your shoulder/hip shouldn't just "fall out of the socket" once a week or so (I became expert at putting them back in).
b) I collected her symptoms, went on Google, found this (rare, genetic) condition that matched. There was precisely one doctor actively researching it, but it was in all the medical textbooks. Arthritis wasn't even close to matching the symptoms, but it was listed under the arthritis departments and diagnoses every time because it's SO often mis-diagnosed (which makes you wonder how 20+ doctors missed it).
For instance, one of the symptoms is a reduced effectiveness of anaesthetics, and my ex- had a chronic fear of dentists because - even when anaesthetised - it hurt her too much. That's too simple to be a diagnostic on its own, but after 20+ such odd foibles of her health explained within 10 minutes of reading, things started to click (and not just her joints!).
c) We took it to our doctor. He was overjoyed and keen. He had a diagnosis that he'd never seen before, it fitted the symptoms he had recorded in her notes perfectly, it was commonly mistaken for the arthritis that doctors before him had diagnosed. He was able to say that 20+ doctors before him were wrong, that "he'd" spotted the problem, and prove it. He ran off, researched it himself, and said he thought we were right.
d) He sent us to a specialist (ironically, an arthritis consultant). They confirmed the diagnosis in seconds, and said they would have been able to in seconds for the previous few decades as it was well-known to them even if there was little they (or anyone else) could do to treat it.
e) She received treatment (physio, painkillers, etc.), an official diagnosis, found support groups, was made aware of the chances of passing it on to our daughter (who has a much milder form, that isn't pain-associated, which probably means she'll be good at ballet and gymnastics and not suffer like her mother, but she'll still carry the gene and needs to know that when she gets older), got on with her life, and hasn't been back to a doctor for anyth
Foolishness (Score:5, Informative)
My mother has worked in the medical industry her whole life on the administrative side. Since I was a kid, she would always go on and on about "always get your full medical record, check it for errors. Always ask for an itemized bill and check it as well." Then, a few years ago she got cancer, and thankfully survived and is cancer free after several surgeries and radiation treatment. And guess what... her persistence paid off. She again asked for an itemized bill, something that, over the years they've gotten more and more reluctant to give us... and the hospital had literally double charged her for everything. 2 pillows, 2 blankets, 2 room stays. They tried to argue this with her, but she had experience in the medical field and pointed out to them that if she had received the dosage of general anesthetic listed on the bill she'd be dead. The insurance company hadn't even caught it. She saved them hundreds of thousands of dollars, and they sent her a letter thanking her for her diligence. She only saved herself a few hundred dollars in co-pays, but she was proud none-the-less. Your medical record is yours, not the doctors. You should have full access to everything in it, and should be able to remove anything that you feel is inaccurate at will.
Re:Conspiracy! (Score:5, Informative)
Re:Conspiracy! (Score:5, Informative)
http://en.wikipedia.org/wiki/List_of_countries_by_total_health_expenditure_(PPP)_per_capita [wikipedia.org]
Re:Conspiracy! (Score:2, Informative)
...because it's not like having stronger painkillers could lead to bigger problems or anything.
Look, that alcoholic's been sober for years! Let's give him a drink!
Re:5 min on google 10 years medical training (Score:5, Informative)
5 minutes on google will tell me that the self-protecting asshole doctor prescribed a relative of mine a drug containing paracetamol, which google helped me learn was a synonym for acetaminophen.
What's the big deal? Well the relative had knee replacement surgery, so painkillers were necessary. The asshole doctor ignored the fact that he was explicitly told not to administer anything containing acetaminophen because the patient had liver disease and explicitly stated such on multiple occassions. The doctor didn't want to go through the hassle/overhead of dealing with a schedule 2 drug, and just prescribed the drug containing acetaminophen.
Even after explaining to him that 'No, this person really needs to not take acetaminophen/paracetamol/tylenol/etc' we still discovered that they kept 'resetting' and going back to giving him the drug.
So you will have to forgive me for not trusting 10+ years of experience vs google when the asshole kept giving tylenol to a guy with liver disease.
Re:Conspiracy! (Score:5, Informative)
Actually, malpractice insurance is around 2.4% of the overall cost.
http://www.hsph.harvard.edu/news/press-releases/medical-liability-costs-us/ [harvard.edu]
Re:Conspiracy! (Score:5, Informative)
I'm saying expensive cancer drugs are banned because they would increase healthcare costs to US levels:
This is the key point. The American health care system is expensive because we demand expensive health care.
For those of us with insurance, we pick the best treatments, not the most economical. For those of us that can afford to choose what hospitals we get non-emergency treatment at, we pick the ones that have the experts, and the robot surgery facilities, and the fancy new MRI and PET scanners. Prices are set by contract with the insurance company, so why wouldn't we pick the one with the best marketing/facilities?
When we have bad outcomes, we sue the doctors, the hospital, the equipment manufacturers. We (via our lawyers) say things like, "they should have done more." This encourages them to practice medicine defensively: use the more expensive drugs, book more time on the expensive imaging devices, pay out settlements as a cost of doing business. And so, as time goes on, consumption of expensive health care rises as expensive health care options proliferate. In some ways this is good (sometimes the expensive options actually are better), but usually it's just wasteful.
It's easy to blame "free riders" and EMTLA, but this is a small fraction of healthcare expenses in the US.
Re:Conspiracy! (Score:5, Informative)
Price gouging... Private hospital in tiny town: $18,000 for 36 hours in a womens health room with a straight saline drip, half of that bill was for the saline drip (billed as "IV therapy", it had no meds in it and was only there so they had a line open if needed) Closest hospital equipped to deal with a 7 week preemie: $17,000 for 10 days stay total. Lifeflight, 3 days high risk pregnancy observation and blood pressure treatment, c-section, 7 days of recovery, and emergency hemorrhage treatment 2 days after the c-section
Even couple hour ER trips on the weekends where they just tell us "Sorry you're in blinding pain but I don't feel like doing anything, have some tylenol" result in multiple $5,000-10,000 bills from the hospital, doctor, nurses, oncall surgeon/anesthesia/radiology who wasn't even there and did noting.
I'm sorry, but [citation needed] here. I work in the health industry. A helicopter flight [wjhg.com] alone to a close hospital is on the order of $10,000. One figure quoted to me was that it costs $1,000 to wheel the bird out of the hanger (granted, likely a mark-up). ICU care [nih.gov] is on the order of $3,000-5,000 a day minimum, without major intervention. A c-section [healthcarebluebook.com] is going to be on the order of $10,000-30,000 itself. The OR [stanford.edu] is billed on the order of $30-100 per minute. Blood [nih.gov] is a couple hundred (~$500) per/unit. This doesn't even include the cost of medications or ancillary services.
Your bill for a high risk pregnancy/premie treatment is more likely billed at $170,000, and in reality could reach $250,000. What you saw was probably a negotiated price from your health insurance, or mark-down from medicaid
I will agree that your community hospital bill was way out of line, but the upgrade in care, especially at a teaching hospital is going to be much higher.
Also a 7 week premie is non-viable. That is considered a spontaneous abortion. You probably meant to say a 32-week premie, which while serious, is a very survivable stage with modern care. (Premies are classified by length of gestation, not by the time remaining.) And FWIW, the current cut off (e.g. documentation of survival) is at about 25 weeks, it improves at 26 weeks where the mortality (chance of death) is about 50%
As an aside, I threw out those figures off the top of my head, and decided to verify and add the citations....I was pretty damn close (off on the ICU by about $1,000/day, but I was still in the ballpark). I'm either: that cynical or I've been at this too long....
Re:Conspiracy! (Score:4, Informative)
It's worth noting that Asian americans have a higher [worldlifeexpectancy.com] life expectancy than residents of japan.
Japanese Americans have a higher economic status than the median American, and higher than the median citizen of Japan: http://en.wikipedia.org/wiki/List_of_ethnic_groups_in_the_United_States_by_household_income [wikipedia.org]
Since race is strongly correlated with life expectancy, the mere fact of a more diverse population brings US numbers down, even if we handle every racial group better.
When we control for socioeconomic status [ssa.gov] the race correlation of life expectancy either is drastically reduced or else disappears entirely. You are trying to paint an economic problem the U.S. has (extreme disparity of wealth and serious poverty) which we could attempt to rectify as an inevitable genetic thing that no one can do anything about.
Life expectancy is a poor measure to star with, since it's not closely tied to medical care in particular.
Since it contradicts the considered option of the world medical community you need to at least try to post a link to substantiate such a radical claim.
In fact since 3/4 of the potential years of life lost in the U.S. before the age of 65 are due to medical conditions [google.com] your claim is nonsense. The link is very strong.*
Social factors are a major cause of premature deaths. Life expectancy at later ages may be more relevant, as medical conditions start taking over causes of death instead of accidents and violence.
The claim is false for those under 65, as well as for those over 65, which are acknowledging here.
The definition of live birth as actually calculated differs from country to country [nationalcenter.org] and this has a large impact on numbers [bmj.com]. As a way of avoiding those differences in counting live births, I suggest perinatal mortality instead. And, go figure, the US is better [who.int] than some of the countries that regular infant mortality would suggest would surpass it. The UK (25th) for instance goes from being 2 better than us to 1 worse on rates. It's funny, but the numbers on that wiki link do not correspond to sorty by any of the actual infant mortality numbers. I believe perinatal has it's own landmines, but the time frame immediately surrounding birth is more connected to medical system than from birth to 1.
We do better true, but we are still 24th on the list.
*There is a claim that has been bouncing in the right wing megaphone echo chamber for four years asserting that if you control of accidents and violence U.S. life expectancy jumps to number one. The claim is false and traces to a single miscaptioned table in a report by conservative think tank economists Robert L. Ohsfeldt and John E. Schneider. The table shows that the U.S. would lead in life expectancy if U.S. life expectancy tracked the life vs GDP trendline of the OECD. In fact it does not, it does far worse - which is exactly the problem that needs to be solved.