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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".
"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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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.
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
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 ;-)
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 ?
Not necessarily a bad, nor a pejorative statement. It means that either your wife doesn't understand what is going on (a bad thing) or she wants to know what is going on (a good thing) and differentiates her from someone who just sits there and stares at you, essentially indifferent (the usual state of affairs). It could likely be better phrased but that's a problem when you are rapidly dictating things.
If I saw that on a chart, it would be a clue that I might have to engage her differently from your typical bump-on-log person.
Faster! Faster! Faster would be better!
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
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.
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.
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.
I don't think it was an insult. If she goes to the next doctor and doesn't ask a lot of questions, the doctor should suspect depression or neuropathy and start looking into it, if only to rule it out. That's his job.
...and they said the "Anonymous Coward" option was the Worst Idea Ever.
Why does everyone assume that access to your medical records means you will be given the only copy in existence and there won't be a digital file stored on the server or a copy in your doctors office? Seriously, in this day and age why would you assume that just because you walk out of an office holding a sheet of paper your doctor must no longer have access to that data? Even without digital records we have had photocopiers for how many years now?
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.
Sounds like the former to me, too. I don't want medical providers sugar coating or outright lying to me. Give it to me straight, doc.
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.
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.