Slashdot Mirror
Putting Medical Records Into Patients' Hands
Hugh Pickens writes "Roni Caryn Rabin says patients have a legal right to their medical records, though access can prove difficult. But what would happen if patients were encouraged not just to see their medical records but to take them home, study them and really own them? A research collaboration called OpenNotes set out to answer this question, publishing the first results of a study on physician and patient attitudes toward shared medical records and demonstrating that for patients, at least, shared medical records seems to be an idea whose time has come. 'That's the great challenge in medicine: getting patients to be more active in their own care,' says Dr. Tom Delbanco, a principal investigator of the study. 'What we're doing is opening the black box and letting you look inside.' Dr. Delbanco and his colleagues recruited more than 100 primary care doctors who were already using electronic health records to volunteer to share their medical notes with patients. Patients were enthusiastic: 90 percent thought they would be more in control of their care if they saw the notes. They weren't worried about being confused and most said seeing the record would help them take better care of themselves helping them better remember their treatment plan, understand it and take their medication. The goal is to engage patients more fully in their own health. 'Knowledge is power,' says Jan Walker, the study's senior author. 'A patient goes to the doctor only once in a while, but in between visits, you're making all kinds of decisions that affect your health every single day.'"
Why was Google not able to make this successful? Is it because people aren't interested in being accountable for their information?
Seriously, if patients take the records home with them, then what. I don't personally have any knowledge that would allow me to understand the records. Most folks probably don't know how to secure them properly.
Sure people do have the right to see those records, but that doesn't necessarily mean that they should be encouraged to take them home with them. Of course make it clear that they can look or take copies if they like, but encouraging it seems like a poor idea.
Thought maybe they were implanting chips with health records into patients' hands.
Mixed views on this one. I can see the reasons why it might be a good thing. I'm also conscious, however (having spent quite a lot of time around doctors back when I was doing summer work in a general surgery in the late 90s) that one of the big problems with giving patients too much information is that they will take it and - lacking medical training - use it to jump to the wrong conclusions, imagining all kinds of ailments that they just don't have.
Certainly, there are no end of cases of people looking up symptoms on the internet and deciding that they have a combination of ebola, bubonic plague and some obscure disease that only affected horses in 13th century Denmark, when in fact they have the flu. It wastes a lot of medical time and effort that would better be spent elsewhere.
That said, you do also hear the occasional stories of missed diagnoses of much more serious illnesses. Like I say - could go either way. I suspect that it would need to be accompanied by a lot of work on putting information into the appropriate context and providing advice on interpreting it, which could be expensive.
The data and information in my Medical Records is about as foriegn to me as 'C' Programming Code is to a Hair Dresser! Now if we can get IBM's Watson Computer to cypher it all, then maybe?
-- By all means let's be open-minded, but not so open-minded that our brains drop out.
Going to a chiropractor, shell out $ 300 for X-rays and he keeps them for good to sell the films later for silver recovery (or something like that) after a set time period - ?? years. What do I pay for and who owns what I pay for? Consumer ripoff!
The only way is to have a doctor friend to request the medical records from another doctor and then give them to you or tell them you will be going out of the country and absolutely need your medical records now.
But: what comprises a medical record? I can't think anything else but whatever one tells the doctor (therefore he knows), lab exams (which as far as I know belong to the patient, at least back here in Brazil) and the image (even with the microscope) tests which require interpretation and then a report is produced (which is taken home as well).
So what's the big deal?
Personally, my family found it useful while living in France, where having copies of your medical records are your responsibility. For someone like myself that saw the doctor 1 or 2 times a year, it was convenient to go back to him and say, yah, last time we tried these two medicines for my cold, and this one worked, can you prescribe this one, etc. Nothing complicated, but it helped to make a bit of a closed loop on the treatment history if I was actively involved in the treatment history. Just my experience.
In the an audience of Insurance, Administration, Physician, Nurse, Billing and Legal requirements let's turn _that_ into another product " for sale".
While I agree patients have the right to view their records (nothing should be a secret), the reality of the situation is that patients are not qualified to make use or sense of their records. Anyone who has gone to medical school has gone through a period of hypochondria where as you learn about disease X you are convinced you have it -- all the symptoms seem to line up, etc. But no, there are a million reasons why a trained professional knows you do not have the disease. A little information is a very dangerous thing. Patient care will almost certainly go down.
"They weren't worried about being confused and most said seeing the record would help them take better care of themselves helping them better remember their treatment plan, understand it and take their medication."
I had to laugh at this finding. I am a non-clinical worker in the healthcare industry and hold a post-graduate degree. Still, it takes a good deal of effort for me to fully understand a typical raw medical record. Assuming you get past the jargon used in most records (no small feat), you then have to see the big picture, which may or may not be spelled out in the record.
One huge issue is that providers have no motivation to chart with the idea that a patient will end up reading the record for substance. The primary motivation for most providers is to create a record that (i) will be understood by other highly educated medical professionals and (ii) can serve as the proper basis for creating a proper bill. I cannot think of a system that is less geared toward creating material that an average patient can understand (except, perhaps, if the record were in cuneiform).
I recently negotiated the purchase of a software program that takes a physician's instructions to a patient and suggests edits such that a 6th grader could understand the instructions. All written patient instructions are being run through this system at our hospitals (subject to ultimate review by the doc before they are handed to the patient). But these same 6th-grade level readers are now going to glean substantive meaning from a raw medical record? This is either evidence of how few people have reviewed a raw medical record or, alternatively, that hope springs eternal.
Granted, I rarely visit the doctor, but I would appreciate having copies of my records. I recently applied for life insurance which included a medical exam/blood work/etc. I was very pleased that my insurance agent gave me sealed copies of those records. It let me see where my various blood levels were at, and I discovered a couple that were a little high. Admittedly, my wife is a nurse so she was able to give me more information on some of the items, but on a few, she just googled for an answer much like I would have. Seems kinda obvious to me. They're MY records. I should have copies, for no extra cost. Heck, there are probably errors in there too that, if I could see my records, I could correct, much like a credit report.
I'm generally not a fan of government intrusion into my life, but I would like to see it mandated that patients have a right to copies of any/all of their medical/dental/vision/etc. records, at no cost.
My sister works as a Medical Assistant in a very small family practice. In fact, the practice is so small that my sister and the doctor are the entire staff. They hire an electronic medical records service from "the cloud". This service makes it possible for every patient of their practice to have on-line access to their records. The records get updated in near real-time because both my sister and the doctor use tablet computers. The tablets go everywhere, even the exam rooms, so as notes are taken they go directly to the patient's records.
I have not heard any details about how many of their patients actually USE this service. I would bet no more than half, since many of their patients are geriatric cases - too old to want to bother to learn how to use a computer.
My sister and the doctor both are very much in favor of this kind of access to medical records. They think it makes their job easier. It gets more details to the patients and it does not tie up the phone just to be reading records to someone. It also lets patients remind themselves about treatment decisions that have been made.
It requires an ActiveX object to access the records and so is useful only for Internet Explorer users. The vendor is supposed to be working on a way for Mac users to get access as well, but they are not there yet. Firefox and Linux? Ferget it! Heck, they just added support for IE 9 and 64-bit Windows a few months ago.
If this hasn't been mentioned already, I think this could help improve doctors too. I go to the doctor and he sees me for a few moments, we talk, he leaves. If I saw what he wrote I suspect he might spend a little more time talking to me and discussing overall health.
OTOH it could certainly have people who don't know any better harassing doctors over trivial issues.
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This is basic information, folks. I think it would effectively change the whole healthcare game, and put more power in patients' hands. Granted patients cannot all be responsible with their own records, but letting them take a copy with them allows them to have a bit more leverage in analyzing what is wrong with them, rather than depending 100% on the mysteries of the medical field. Not being a medical professional really doesn't factor into not being able to understand the records, because one could always do the research at home or library, gaining access to other basic data sources to help them explain what things mean. I'm not saying that patients should relinquish doctor care altogether, but it would help them assess if they are getting adequate healthcare, and getting their money's worth. Look at it this way, if I have visible symptoms of something, and I know that they closely fit to a certain infection, disease, or physiological issue, that's half the knowledge right there, so why should the health provider be the only one to have access to the other half of my information, that include pertinent data, like lab results, blood pressure measurements, well-structured authoritative check-up data, and possibly casual analysis made by the provider? This would not just help the patient make good decisions about their healthcare, but also provide them with a quality assessment of the provider community, and would allow healthcare customers to weed out the bad from the good, and not just have to settle for blind trust when it comes to believing what our medical professionals are telling us. Down with the information asymmetry!
The best reason to take your medical records home is that you can upload them to the social networks (with privacy options) so that you can share and compare them with the people you want. Especially with people who have similar symptoms, and perhaps find some common solution for your issues.
Quote from my wife's medical record, after we had access to it: "She asks a lot of questions". Thank you asshole. If you provided more answers, maybe she wouldn't have had to ask the same questions over and over now would she ?
People will lose their medical record.
People will have their medical record handy at job interviews.
Homeless People will use their medical record as a blanket.
People are not reliable in handling their own medical records or nuclear reactors.
I cannot think of a system that is less geared toward creating material that an average patient can understand
The only reason that is the case is because medical records have been hidden from their owners for so long. As soon as patients start to expect to be able to use their own medical records the pressure will be on to make those records more comprehensible.
When information is power, privacy is freedom.
Probably most places using Epic will be doing something along these lines, but I've only got experience with GHC. I can go online, look at the tests I've had, with results, and the doctors comments. There's nothing on their system which I don't have access to, though some of it isn't released until the doctor has discussed it.
Why should they become more comprehensible? They are a record by a professional for a professional, not for you - if you require them to become readable by any random person then you are going to create a lot more work for those writing the records, and possibly introduce ambiguity into records where a doctor doesn't want to write a thousand word essay to correctly describe a specific condition within a broad area of similar conditions, avoiding identifying the condition as a similar issue but cannot be treated as such due to preexisting problems when seven words of medical jargon would be more precise anyway.
It's like saying C should be written so that anyone downloading the Linux kernel can immediately understand what's going on. That isn't ever going to happen, even though the code is available - it's still aimed at those with a working knowledge of C, not Joe from the diner.
That's not to say that having your medical record has no benefit - it has loads.
There certainly won't be any motivation to write the records for an audience with no access to the record. Something has to come first.
I'm an advocate of patient's keeping a complete copy of their records.
-Dave
I recently negotiated the purchase of a software program that takes a physician's instructions to a patient and suggests edits such that a 6th grader could understand the instructions. All written patient instructions are being run through this system at our hospitals (subject to ultimate review by the doc before they are handed to the patient). But these same 6th-grade level readers are now going to glean substantive meaning from a raw medical record? This is either evidence of how few people have reviewed a raw medical record or, alternatively, that hope springs eternal.
We have established already that you can read "raw" medical records. So there's no reason that an intelligent patient who puts the effort in can't. And even if they don't bother to put in the effort, there's always the placebo effect. Here, I mean that the patient has the sense that they're contributing to their health (just as taking a sugar pill might be perceived to help make them better) and hence, achieves a better health outcome.
While 90% of your typical hospital chart is both incomprehensible and useless after you've been discharged (you probably don't care how much you peed on a given day), the Discharge Summary, Operative Notes and most radiology reports should be reasonably comprehensible with a little help from a dictionary or Google. If a specialist is consulted the Consult Notes may be significantly more technical, but potentially very educational. Progress Notes are frequently still hand-written and may be illegible, but I still recommend people get copies of them. Labwork is just raw data that most people won't be able to do anything with, but in most cases the results that are outside 'normal' will be flagged for you.
I recommend everyone acquire everything I've listed above anytime they are in the hospital. If you have any questions bring it with you to your regular doctor and ask!
Do you know what I do when I'm handed one of those insulting little sheets of paper? I look at the staff and say something like "I'm not a functionally illiterate idiot. Tell me what I really need to know."
Uh, "if it looks roughly mouse-shaped according to my infra-red sensitive pit, eat it"? --Chris Burke 09-08-10
Benefits
Drawbacks
In the longer run, assuming that patient portals to EMR data allow users access to the standardized EMR formats (a myriad of standards, really), I expect to see some new companies developing software to help patients interpret and track their healthcare (beyond what the portal provides). These sites would require patient approval, but would be free to analyze and recommend the EMR outside of the constraints of the "healthcare entity" policies. That is, the EMR is the raw "spreadsheet" of health statistics, and I would expect to see Intuit (Quicken) or Mint-like companies and services come along to make more sense of it.
Any sufficiently advanced technology is indistinguishable from a rigged demo. -- James Klass
I switched doctors a few years ago, I moved so I needed to take the records with me. It was a three month ordeal. They kept saying that the records were not mine. Meaning that I didn't own them. I kept saying to them. "Who are the records about?" and they would say "You". So I said well why can't I have them? Their answer was that they owned them since they requested the tests and they wrote up the diagnoses and so on. Finally I said "Look my new doctors are refusing to operate on me until they do a back check of all the things I've had done. So your saying that the records are about me, paid by me though my insurance company and co-pays. But I can't have them because you own them? Show me the paper work that I signed that says that I agreed to this, or write me up a document that says that you are refusing to give me my own medical records so I can consult with a lawyer on this." With in 3 more weeks the new doctor had the paperwork since we now had to wait for the company that my old doctor uses to photocopy and then ship to the new doctor. It turned out I didn't need the operation in the end.
So in my case it wasn't that I wanted to read them, I just wanted them to give them to my new doctor. And HIPPA was followed by the way.
Right now they are dumb machines.
The company that owns the rights to the locations got bought out by an EMR provider.
They are planning to replace all the machines with kiosks that will have displays that will connect with your EMR, so when you take your B/P you have the option of logging in to your EMR account and having it added to your record.
These things get used about 25 millions times a year. Once people start using them and getting accustomed to seeing their EMR, they are going to expect more access.
Not sure where the money is in this deal though...
using electronic health records to volunteer to share their medical notes with patients
How much storage space will you need for that many pages of "you really need to lose weight"?
Does it come with a NAS?
My wife practices at a major medical center that has adopted this approach. Most of her patient population are non-English speaking immigrants that have no use for this piece of paper and so they tend to just throw them out anywhere convienent or leave them in the waiting room.
What's worse, is that my wife is required to give this to them at the end of their visit. This means that my wife spends almost the entire visit on the computer entering the notes instead of providing personal care to the patient. EMR sounds great in theory, but in reality it turns highly intelligent, highly educated individuals into data entry clerks. Great for the bean counters and the malpractice lawyers, lousy for the practitioners and the patients.
Average Intelligence is a Scary Thing
I cannot think of a system that is less geared toward creating material that an average patient can understand
The only reason that is the case is because medical records have been hidden from their owners for so long. As soon as patients start to expect to be able to use their own medical records the pressure will be on to make those records more comprehensible.
Nope. Too hard. I cannot routinely make a moderately complex medical note comprehensible to any random patient. For one thing, patients vary enormously in their ability to understand things - you might be an engineer who would be interested and could understand a lot of technical detail. You might be functionally illiterate. No possible way to reconcile that.
Now, what people can expect is that if you look at your medical record and don't understand something, they take the time to sit down and explain it in terms that you do understand. But that isn't the point of the actual medical record, nor can it be.
Faster! Faster! Faster would be better!
I had to laugh at this finding. I am a non-clinical worker in the healthcare industry and hold a post-graduate degree. Still, it takes a good deal of effort for me to fully understand a typical raw medical record. Assuming you get past the jargon used in most records (no small feat), you then have to see the big picture, which may or may not be spelled out in the record.
Well, guess what? It should be spelled out. If it's not, I'd call that deficient charting.
One huge issue is that providers have no motivation to chart with the idea that a patient will end up reading the record for substance.
Well, since one of the criteria for receiving ARRA stimulus funds (and not having Medicare payments cut) is to provide medical records to patients who ask, they will soon have that motivation ;-)
Here's why you MUST have a copy of your medical records, ON PAPER (and film for radiographs) (in addition to electronically). Disaster of some sort strikes (hurricane, earthquake, fire, civil unrest)... no power, your doc is incommunicado, the local hospital is out of service. Oh, you want to use that slick EMR system on the secure server? But there's no datacom available to transfer that multigigabyte radiograph image? Bummer..
This is real life.. in the 1994 Northridge earthquake, this kind of situation persisted for about a week, if not longer.
How are you going to get care? Hope the new doc is good at taking histories and you're good at remembering? No, you want to be able to walk in with your accordion file of stuff and say, here, this is *MY* copy, and you can look through it, and copy what you need to render care, but I want it back.
Yes, there are other reasons you should have your records, and no, they're not incomprehensible in the long run. Sure, you probably don't know how to interpret the lab results, and you'll find all sorts of comments your doc made about you being a non-compliant patient when it comes to losing 10 pounds and not drinking as much as you do now, etc.
I am a doctor (although currently in a very junior position), and my employer, the local public health care provider, is planning on making patient records public in the very near future. (Link in Swedish, use google translate) For this reason, I have given this a bit of thought. From the larger perspective, I am all for empowering patients to access their records. The main argument against it, as I see it, is that there is a certain group of patients, maybe 1-2 %, where this hypothetically might become a problem. These are the patients who come from a position where they already have established a mistrust of healthcare providers, often (but not always) because of real or perceived mistreatments. There is a tendency among these patients to interpret everything said and done during their dealings with health care professionals in the worst possible way, reinforcing their distrust of health care in general. Having these people access their medical records, with all the latin, medical lingo and outright physician slang therein, could, I imagine, further fuel a feeling that something is going on behind their backs, which I believe is what is often at heart of the problem. On the other hand, you could also argue that it would have the opposite effect, reinstating a feeling of control in these patients when they realize that their doctor didn't write such horrible things in the journal about them as they might have imagined.
As for being a game changer, as some other people has suggested, I personally think this will have little impact on the whole. Really, as a doctor, believe me: we don't habitually hide things from our patients, as some people seem to believe! The kind of people who would use the info from their records to surf the web to find alternative treatments for their diseases etc., know all the meaningful facts even today from just discussing with their doctor. Knowing exactly how high their hemoglobin count was two months ago, and what exact differential diagnoses their doctor considered and decided to document last week, is hardly going to change that -- they would already have asked the right questions. Furthermore, the people who are overly respectful of white coats, have language issues and so forth, who could be considered most in need of information empowerment, is probably those who will make the least use of this service.
"Everyone who believes in telekinesis, raise my hand..." - James Randi
"Why should they become more comprehensible?"
Be cause the patient is paying for them?
"It's like saying C should be written so that anyone downloading the Linux kernel can immediately understand what's going on."
Not even a close analogy. Let's make it more slashdoty. Would you pay a mechanic if he didn't produce a good, comprehenable record of the work acutally performed?
The days when "your doctor" visited you in the hospital are gone. Hospitals doctors take over when you enter - especially in an emergency. Not having your complete history of drugs, symptoms and contact numbers can be very dangerous. Recent experience tells me that hospital staff react to the diagnosis given at the point of entry which can result in the automatic administration drugs that could kill you merely because the staff doesn't have your complete medical history. Any story about medical records must include stories about how the American medical system really works today - not how the "House" TV series pretends. It is dangerous to enter a hospital alone today. For some reason we Americans think the world works like we see on television. There are more obstacles to getting your medical records than you think. You not only need to have access and understand your medical records, you need an advocate who will be your spokesperson when and if you enter the "power" of a hospital's administrative grasp. I had a sister-in-law given a diagnosis of schizophrenia on entering a hospital under an emergency attack that had nothing to do with that disease. Because the hospital automatically administered a "calming" medication for such a diagnosis and that medication interacted with a medication she was taking, she became extremely violent and tried to kill herself. I give that horrible story because it shows how fast a medical staff should have access to your medical records in order to not make potentially fatal decisions.
When we moved across country, we requested copies of our medical records to take with us because we didn't have an established practice they could just fax things to. We received copies of everything for everybody. They included the records of the two c-sections I had while living back East. When I reviewed my first pregnancy records and the surgery records I discovered that the doctors and nurses had downplayed things and even out right lied to me while I was in the hospital. After trying to induce me for two days, (I had high blood pressure), the doctor sat down and told me might as well do a c-section. It is the weekend. If you go home, you'll have to wait for two or three days for the drugs to leave your system before we can try inducing you again. It would be much better to just get the baby delivered. They made it sound like it would just be a hassle to try again later. My records showed me that they thought I had toxemia. You know the-get-the-baby-out-now-or-else-she-could-go-into-seizures thing.
Also, from my experience on the operating table, I overheard them telling each other that I had lost a lot of blood. I would need to have my iron levels checked to make sure I was recovering properly. When the tech came in later on to draw blood, I mentioned that to him. "Oh, no. You didn't loose a lot of blood. This is just routine." My records showed I had lost 1800 cc's of blood. When I compared it to the next delivery (also a c-section), I lost only 800 cc's the second time. And they didn't come in to draw blood for "routine workups".
ARRA requires providers to give a copy of the record to patients who ask. As far as I know, it does not require providers to make the record easily understood by patients.
You keep your medical records. You take them to the doctor if you want to. Or not. Totally up to you.
You also pay in cash for services rendered.
It works remarkably well.
I live in San Diego, so I see both sides, literally.
The key for some people is not simply being able to read but to alter their medical records. Especially when their medical records contain damaging information that will affect their ability to get care in the future - and sometimes prevent them from getting the sort of care they want.
The best example of this is a notation that someone is "drug seeking". This will limit your ability to score drugs from reputable medical professionals. For persons that are indeed drug-seeking and trying to use the health care system as a way to get high it would be extremely valuable if they carried their medical records with them and could alter them to eliminate such pesky notations.
There is also the fixation that people get that they have some medical condition even when all evidence is to the contrary. It would be helpful and convenient for them to simply be able to enter a diagnosis of what they believe they have.
If you want access to medical records - read only access - that is one thing. But what health care professionals have to deal with is the consideration that access may not be limited to read-only access and there are more than a small number of people that would find such access very helpful. Why do we not have access and/or control over medical records? Because some people would abuse this for their own benefit.
There are probably an extremely small number of people that the ability to edit their medical records would be helpful because of errors the health care community has made with them. This is fortunately an incredibly small number and when compared against the number of people that would abuse read-write access makes the issue of people correcting mistakes irrelevant.
Ever read your tab at a restaurant? Same deal, but you probably know more about food than you do about medicine, so it just seems less cryptic. Still, you know that you didn't order the clafoutie, so you can tell them to take that off the bill and bring you a fresh one.
From experience, better access to my records would have caught a serious problem that required major surgery because my doctor wasn't listening to me. Had I had access to my records, I would have seen that he wasn't recording anything I was telling him, so when he was making recommendations for treatment, which were few, he wasn't paying attention to all of my symptoms.
I've had a personal experience where access to my medical records corrected a diagnosis.
In the US we have the right to access our medical records/studies, but the mechanisms for doing so vary from provider to provider and can be awkward. I took the trouble to get a digital copy of images from a fairly extensive MRI brain scan (it took about 50 minutes actual time in the machine listening to what sounded like every bad prototype alarm clock built over the past 40 years going off randomly) and spent a couple hours poring over them after having read the very short radiologist's report which suggested an alarming conclusion in it.
Although I knew virtually nothing of MRIs or brain structure before this (and still know very little), I noticed something on one slice of one series that I didn't understand and was not mentioned by the radiologist. I noticed however that the radiologist had mentioned, and seemingly based their "consistent with X" conclusion on, a finding in the corresponding slice in another series (different relaxation times, IIRC, was the main difference between the two series but I don't recall for sure).
When I next saw the neurologist (a specialist in this particular area at a fairly well respected medical school), he offered to show me the MRI scans just as the visit was wrapping up. I had not mentioned the possible anomaly I had seen because it was so obvious that it never occurred to me that a radiologist with about 25 years of experience would have missed it. After the neurologist was done showing me the "slice/series" image the radiologist had mentioned, I asked "If you have another minute, I was curious what the more widespread anomaly in this other other series on the corresponding slice is about". The neurologist pulled up the corresponding image from the other series and, in well less than five seconds after the image was on his screen, let out an slightly audible sound of surprise and said something like "I'd like to get a second opinion on this" and left the room to do just that. When he returned five minutes later he said something to the effect (in a much more less incriminating language) of "the report is bunk, there's nothing wrong and what the radiologist report identifies is just an artifact of an unimportant variation in vascular structure".
Eventually, review by four different radiologists confirmed the neurologist's interpretation and the report was updated.
As a result of fairly easy access to routine scan results and a bit of exploration, I discovered that instead of have a quite serious problem of significant (and perplexing to all) concern, there was absolutely nothing wrong.
I am grateful that the neurologist took the time to go over this with me, had the knowledge of MRIs to instantly recognize that the radiologist was wrong, and was upfront about it. I remain alarmed that $30k worth of scans and radiologist reporting at a respected teaching university was screwed up so bad that I, with no training, saw something so obvious that changed the diagnosis from something serious to something completely benign.
Well, simple solution for that. When the insurer gets a bill from a doctor they first send a form to the patient (electronically if possible).
Question 1: Did you obtain the results of all tests that you were given and a complete copy of your medical records?
Question 2: Did your doctor review these with you and explain their content?
Question 3: Do you feel satisfied that you understand your condition and the necessary treatment?
If any come back No then the insurer denies the claim and tells the doctor to resubmit once they've sorted it out. By law the doctors would also not be able to collect on the bill.
While you're at it, bills will not be paid unless a patient is given copies of all necessary prescriptions, whether for pills, eyeglasses, contact lenses, or durable medical equipment. Too many health-related professions use what should be safety-oriented laws like requiring prescriptions as a way to avoid competition.
Why should they become more comprehensible? They are a record by a professional for a professional, not for you - if you require them to become readable by any random person then you are going to create a lot more work for those writing the records, and possibly introduce ambiguity into records where a doctor doesn't want to write a thousand word essay to correctly describe a specific condition within a broad area of similar conditions, avoiding identifying the condition as a similar issue but cannot be treated as such due to preexisting problems when seven words of medical jargon would be more precise anyway.
It's like saying C should be written so that anyone downloading the Linux kernel can immediately understand what's going on. That isn't ever going to happen, even though the code is available - it's still aimed at those with a working knowledge of C, not Joe from the diner.
That's not to say that having your medical record has no benefit - it has loads.
Oddly enough though, in this case that little bit of extra work by the doctor's office (which could be done by a staff member or possibly even a computerized system) could aid in substantially reforming the health care system; e.g. by enabling patients to see that Doctor X didn't do anything so shouldn't be paid, while Doctor Z did all the work and should be. It also enables a whole bunch of other things.
I do agree though that patients should only have a copy; be it on USB, paper, or otherwise. (or the other way around - patients get the "original" and the doctor's keep a "copy" - however you want to define those two terms for the sake of the argument/task). There does need to be some integrity in the system maintained, such that modifications can be traced (to a reasonable degree), and doctor's have a method of verifying what they did order such that any crackpot with enough tools to modify the electronic copies couldn't simply make modifications to get what they want. That might require digital signatures, watermarks, etc be put in.
Either way, it's not a simple task.
Truth is like the sun. You can shut it out for a time, but it ain't goin' away. - Elvis Presley (source: imdb.com)
Nope. Too hard. I cannot routinely make a moderately complex medical note comprehensible to any random patient. For one thing, patients vary enormously in their ability to understand things - you might be an engineer who would be interested and could understand a lot of technical detail. You might be functionally illiterate. No possible way to reconcile that.
The enemy of good is perfect. It is pure fatalism to say that because it is not possible to improve the situation for the least capable then there is no point in doing anything at all.
When information is power, privacy is freedom.
The government does not like the idea of patients keeping their own records. That is because the government is encouraging the development of an electronic medical record system in which it has open access to patient records, and which ties a patient to a particular healthcare provider for purposes of control.
In reality, patients should keep their records, and only allow access to people whom they authorize.
It's like saying C should be written so that anyone downloading the Linux kernel can immediately understand what's going on. That isn't ever going to happen, even though the code is available - it's still aimed at those with a working knowledge of C, not Joe from the diner.
No, it's like insisting that commits to the Linux kernel should be required to meet coding and documentation standards, and should be freely downloadable by anyone. You know, kinda like how the way Linux actually is developed.
You're basically advocating that everyone should just run Windows. After all, you're probably not a programmer, and even if you are, you're probably not a C programmer, and even if you are, you're probably not well versed on kernel development. Clearly you have no right to ever look at a kernel, ever.
I'll do just that when you write your programs in plain 6th grade english
Once upon a time, I had a newborn in the hospital. Bizarrely, all the nurses acted coldly towards me. I say bizarrely, because it wasn't my first time and pretty much everyone in the hospital is nice to you when you're having a baby. I saw a note on the tag that had two terms on it EtOH and something I've since forgotten. Well, knowing a little more than nothing, I figured EtOH was ethanol, or the kind of alcohol you drink. WTF? Why was that there? I inquired, and found that it indicated the mother had been drinking during the pregnancy. The term I forgot meant she'd been abusing narcotics. Being married to the mom, I knew it wasn't true and hit the roof. Demanded it be taken off. Wanted to know where the hell they got that from. It took frustrating DAYS to sort out during which they refused to remove it, with the unhelpful, but ultimately apologetic nursing staff. You see, there was a transcription error. The transcription record said "History of alcohol and narcotic abuse." You can guess what word they dropped. "No." As in "No history of alcohol and narcotic abuse. When I made them go back and check again, they found the mistake, but by then we'd been discharged after a couple days of being treated like bad parents.
Thousands of dollars worth of records were lost of my mother's. Shouldn't have left them with the doctors. Extra tests were required because of the missing records, costing more money. Guess she was the exception unless her's weren't the only records lost.
Under HIPPA you have a legal right to your complete records; however the provider has 10 business days to give 'em up. When your loved one is in the ICU fighting for her life, waiting two weeks is not acceptable. I was in this very situation last year. I refused to not have all the information about my spouse's condition...and I finally got the complete records because the doctors and nurses realized that unless I got copies they were just going to have to give me every single piece of information verbally and then wait while I wrote it down :)
For those who think medical records are too complicated for patients -- have you ever looked at a chart? It's not that hard to figure out. The resistance from the medical field is that informed patients take more time and more effort to care for. And in my case, between the internet and a couple of visits to the local university library (for journal access) in short order I knew far more about my wife's condition than the doctors did -- I found them shockingly out of date and out of touch about how to treat her, and I really only knew this because I was able to read everything in her (300+ page) chart.
Agreed! I know squat about medical stuff, but years ago, I had to document one of my systems so the boss could better understand it. That documentation wasn't perfect, and it lagged behind as the system changed, but it did help.
Slow down, cowboy! It has been 4 hours since you last posted. You must wait another few hours.