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Medicine Science

Putting Medical Records Into Patients' Hands 211

Posted by samzenpus
from the taking-your-life-in-your-hands dept.
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.'"
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Putting Medical Records Into Patients' Hands

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  • Google Health (Score:4, Interesting)

    by milgram (104453) on Monday January 16, 2012 @01:12PM (#38714924)

    Why was Google not able to make this successful? Is it because people aren't interested in being accountable for their information?

    • by OverlordQ (264228)

      Why was Google not able to make this successful?

      Nobody knew it existed.

    • I'm sure Adam Bosworth is a nice guy and all, and is a very competent developer. But from what I understand, his claim to fame is being one of the pioneers of XML. That's nice and all; and from a storage perspective, it gives a company an approach to handling many different types of data. But from a clinical usability perspective, Bosworth and team simply didn't understand the needs of the patients or the marketplace. The UI of Google Health was, if possible, even worse than that of Centricity and Cern
    • Why was Google not able to make this successful? Is it because people aren't interested in being accountable for their information?

      No, that's not it. Here is what I heard from the grapevine.

      Centralizing health records a high risk area for Google. There are many privacy implications that come with it. For very good reasons, people value the privacy of their medical records. And many people would just love to sue Google, if it were to ever make a mistake in that area. On one hand, Google has very deep pockets, so it already makes for a very large target. And on the other hand, since Google is deriving almost all of its revenue from adver

  • by hedwards (940851) on Monday January 16, 2012 @01:12PM (#38714934)

    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.

    • People will lose them ... or they'll be stolen. They are much safer when they're not in the hands of people who have no real use for them. Sure, there will be exceptions, and those people already have their medical records at their disposal.
      • by hedwards (940851)

        The doctors I see all give me an after visit summary as I leave the appointment. It leaves out most of the things that aren't relevant to the appointment and mostly just contains information necessary to follow doctor's orders. Then there will usually be information about what to watch for and when to make a follow up appointment.

        But, taking home the entire record or subset of it seems like a bad idea.

      • by khallow (566160) on Monday January 16, 2012 @01:24PM (#38715066)

        They are much safer when they're not in the hands of people who have no real use for them.

        What a remarkable statement to say. There are two obvious counterarguments. First, it's your health. Even if you can't understand much of it, you have a huge stake in what's in there and what you can understand may have significant health benefits for you. That's a big, real use of those records.

        Second, I doubt it's that hard to make use of your own medical records. You don't have to have the extensive knowledge of a doctor in order to keep track of your problems. The knowledge problem is far more limited and you have a head start in understanding in that you are experiencing the medical conditions described in your medical report.

        • by WrongSizeGlass (838941) on Monday January 16, 2012 @01:42PM (#38715254)
          Yes, it's your health, but that doesn't mean a novice will be able to understand what the majority of the information means. The details are rabbits that many hypochondriacs will chase until they self-diagnose themselves into oblivion.

          I don't need all the details of my medical history at my fingertips. I just need to follow the advice of my doctor. If I don't like their advice, or it's not successfully addressing a particular medical issue, I'll seek the advice of another medical professional (who will request a copy of my records). I know enough to know I'm not qualified to be a doctor (let alone my own doctor).
          • by khallow (566160) on Monday January 16, 2012 @01:53PM (#38715352)

            Yes, it's your health, but that doesn't mean a novice will be able to understand what the majority of the information means. The details are rabbits that many hypochondriacs will chase until they self-diagnose themselves into oblivion.

            So what? Doesn't sound to me like you're a hypochondriac (or at least one that can't manage their condition) and even if you were, I don't see how more medical information makes your condition worse than it already is.

            I don't need all the details of my medical history at my fingertips.

            Ignorance is bliss supposedly but it rarely turns out that way.

            If I don't like their advice, or it's not successfully addressing a particular medical issue, I'll seek the advice of another medical professional (who will request a copy of my records).

            And you'll know this how? Sixth sense? Your patron deity tells you what's going on? Chicken entrails? It takes knowledge to make decisions.Medical information is such knowledge.

            I know enough to know I'm not qualified to be a doctor (let alone my own doctor).

            Which is all a non sequitur since this story is not about you being a doctor much less your own doctor.

            • by rikkards (98006)

              Mod parent up, it's hard to provide informed consent without actually being informed. Also the GP mentioned details being omitted that are not pertinent to the visit. My opinion is that I will decide what is needed and what isn't.

              • by hedwards (940851)

                That's why you get a doctor you trust and ask lots of questions. I happen to have Gilbert Syndrome and there's really no reason why I even need to know about that, at least not unless I come into the doctor worried about jaundice.

                I would venture to guess that most people have at least one or two of those sorts of conditions that are only really relevant when interpreting medical tests. You do need to listen to your body and advocate for yourself, but it's asking a lot to expect a lay person to come through

                • by khallow (566160)

                  I happen to have Gilbert Syndrome and there's really no reason why I even need to know about that, at least not unless I come into the doctor worried about jaundice.

                  A fact which just by itself wholly justifies the practice. You also need to modify your behavior to some degree since jaundice can also come up under heavy exertion or fasting. And that's not the only quirk your body has, is it?

        • by rsborg (111459)

          They are much safer when they're not in the hands of people who have no real use for them.

          What a remarkable statement to say. There are two obvious counterarguments. First, it's your health. Even if you can't understand much of it, you have a huge stake in what's in there and what you can understand may have significant health benefits for you. That's a big, real use of those records.

          Second, I doubt it's that hard to make use of your own medical records. You don't have to have the extensive knowledge of a doctor in order to keep track of your problems. The knowledge problem is far more limited and you have a head start in understanding in that you are experiencing the medical conditions described in your medical report.

          Furthermore, as a parent, I have to keep my child's immunization record, and if I don't have it when registering my child for a new school, I'm in serious shit.

          Anyone who is a parent is well aware of keeping medical records... we put our kid's record where we keep our passports and other "don't fucking lose this" papers.

      • by CastrTroy (595695)
        They'll probably be safer at people's houses than in the hands of the medical clinic staff. Remember this story about medical records [slashdot.org] being used as scrap paper at schools? There's countless others just like it. I don't see that this information shouldn't be required to be given to the patient on their request. They do have a legal right to the data, and shouldn't have to put up a big fight to get it.
        • by hedwards (940851)

          That's an enforcement issue. HIPAA exists, issue fines for facilities that aren't living up to their duties and perform audits to ensure compliance.

      • Re: (Score:2, Interesting)

        by M. Baranczak (726671)

        People will lose them ... or they'll be stolen.

        My records are worthless to anyone but me, so why the hell would anyone want to steal them? OK, there are all the friendly insurance companies, who want to ensure that I'm not stealing their God-given profits by hiding some pre-existing condition... but they already have better access to my information than I do.

        You're trying to invent some reason why people should not have access to their own records, and failing miserably.

      • by pmontra (738736)
        I live in Italy. We can take home a copy of our medical records after we leave hospital. it's useful for showing them to other doctors, insurance companies or even lawyers if something goes wrong. most records are paper based but my xrays were on cds with a windows only viewer. It's a standard medical imaging format. I found a viewer for Linux too. I don't think it's a format mandated by the state, only a hospital specific initiative. But there is a law for the right of access to medical records, regardless
    • by PPH (736903) on Monday January 16, 2012 @01:16PM (#38714970)

      Plausible deniability. Once you take your records home, your physician is free to sell them to anyone. If you discover a copy of your records out there in the wild and complain to your physician, he'll just say you must have lost control of your copy.

      • by jklovanc (1603149) on Monday January 16, 2012 @01:40PM (#38715234)

        The issue isn't when one medical file get sold by a doctor as a single file is useless. usually the problem is when hundreds of files are sold from the same doctor.
        Plausible deniability goes away when a large number of records, more than the national average, from a single doctor get loose. Sorry but I doubt very much any doctor can legitimately claim that all those documents were lost by individual patients.

      • Or the other way, you loose control of your document then your Dr. is in a ton of trouble.
    • by Anrego (830717) * on Monday January 16, 2012 @01:16PM (#38714976)

      This is kind of what worries me.

      The internet provides a great deal of medical information, however you still need someone with experience to relate it to a specific case. Patients trying to make sense of their own medical info combined with the amount of information out there (some good, a lot bad, some terrifying) may lead to some issues.

      • by 0123456 (636235) on Monday January 16, 2012 @02:26PM (#38715732)

        The internet provides a great deal of medical information, however you still need someone with experience to relate it to a specific case.

        The last few times we've visited a doctor we'd already done the research on the Internet and knew exactly what the problem was, so we had to wait around for hours just so the doctor could agree and sign the prescription.

        Doctors should really only be dealing with cases where the cause isn't obvious.

    • by Synerg1y (2169962)

      How ever do you hold on to your birth certificate or SSN card then???

      • by Convector (897502)

        Shred that stuff the moment it shows up. You don't want those documents getting into the wrong hands.

      • by hrvatska (790627)

        How ever do you hold on to your birth certificate or SSN card then???

        I don't, and I've never had a problem. I've never been asked for a copy of my SS card. I lost the last one I had over forty years ago. When I last needed a copy of my birth certificate I ordered a copy from the state I was born in. Some documents I worry about, like my passport and insurance policies, and I keep those in a safe deposit box at a bank.

    • by Richard_at_work (517087) <richardprice.gmail@com> on Monday January 16, 2012 @01:27PM (#38715090)

      Well, one thing they will certainly be used for is the basis of frivolous lawsuits - when that morbidly obese patient takes issue with his doctors notes on his "McDonalds addiction" and total lack of medical reason for the fact that he has size 60EE man boobs, guess where it's going to end up?

      Here in Norfolk, UK, Doctors used to use two terms in medical notes up until the late 1990s (or even later - my wife still sees references to them in notes from 2003 or so), Funny Looking Kid and Normal for Norfolk. The terms refer to congenital issues found in children in the more remote parts of the county, where incest and small breeding stock is still having knock on effects today. The terms were banned after they became legal issues in cases after patients got hold of their notes.

      • Here in Norfolk, UK, Doctors used to use two terms in medical notes up until the late 1990s (or even later - my wife still sees references to them in notes from 2003 or so), Funny Looking Kid and Normal for Norfolk. The terms refer to congenital issues found in children in the more remote parts of the county, where incest and small breeding stock is still having knock on effects today. The terms were banned after they became legal issues in cases after patients got hold of their notes.

        "FLK" is still used in the US, at least in conversations between doctors, perhaps not in the notes themselves.

      • by ColdWetDog (752185) on Monday January 16, 2012 @02:27PM (#38715738) Homepage

        That's an issue with the doctor writing pejorative terms in the chart. If you look at really old records (like before we told people they had cancer) you would get verbiage that would make you freeze in your tracks.

        Any doctor that writes "McDonalds addiction" in the chart deserves whatever hassle they get. It's stupid and unnecessary. Yep, there are docs that do that but not very many. And if you are their patient, you'd do well to understand where this clown is coming from and find a better doctor.

        • by blair1q (305137)

          Except that it might be a real condition. I'm pretty sure I had it. Addictive behavior related to certain fast-food menu items. To the point where, after I'd kicked it, I genuinely suspected there had been something deliberately addictive in there.

          Later on I learned that certain combinations of fat and carbohydrates are themselves habituating to the point of addiction. Fast-food joints have that stoichiometry nailed. The composition of their most popular menu items make them about as nutritious as the sam

        • by Richard_at_work (517087) <richardprice.gmail@com> on Monday January 16, 2012 @03:05PM (#38716208)

          When the same patient has presented twenty times in 6 months, demanding that the doctor diagnoses his "glandular problem" to solve his weight issue, while being seen in the waiting area clutching a McDonalds bag and drink on several occasions, it's not a wrong statement to make, especially if he intends on going to another doctor if you refuse the diagnosis.

          It's not stupid nor unnecessary - sometimes the patient is the issue, and it's fine to note that in the records. As a doctor you can and should make a note of such observations, because it helps with diagnosis later on for other issues.

    • by khallow (566160) on Monday January 16, 2012 @01:27PM (#38715092)

      I don't personally have any knowledge that would allow me to understand the records.

      So what? You have the internet, a brain, and you're experiencing directly the medical conditions described in the records.

      • Sound point, but how common are the critical thinking skills necessary to avoid the large amount of damaging nonsense on the Internet?

    • by timeOday (582209) on Monday January 16, 2012 @01:28PM (#38715112)
      I would like to have them just so I could go see a different doctor without the waste of re-testing and the hassle, inconvenience, and frankly, embarrassment of calling to have the records sent over.
      • You don't need to make a call. That's what signing a medical release is for: You go to the new doctor's office BEFORE your visit, sign a release, and the secretary there calls up anywhere you say you've been treated in the past and get all the records.

        No muss, no fuss. No embarrassment of making calls yourself.

    • I don't personally have any knowledge that would allow me to understand the records.

      Perhaps not, but what you do have is access to a massive, global repository of information, replete with search functions; Of course, if you're of the type who's too lazy to Google "cholecystectomy", you're probably not taking home copies of your medical records, either.

      Most folks probably don't know how to secure them properly.

      Yea, filing cabinets are pretty hard to come by these days, huh?

      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.

      Right, because if we encouraged people to be more involved in keep track of their own health and related records, doctors and hospitals would lose that edge they currently posse

    • Also, if they do have them, can you trust the information in them?
      So say at the end of your visit you have a CCD (Community Care Document, the standard XML based format for sharing Medical Records across Electronic Medical Records)
      What is there to stop me from altering my record to say that I really need those pain killers or "Pain Killers" in other states prescription refilled, or to prescribe me a higher dose, or heck the person is a hypercondreact<sp?> (Yes I got sick of trying to find the right sp
      • by ColdWetDog (752185) on Monday January 16, 2012 @02:34PM (#38715824) Homepage

        You come in with a document that says "takes 4 80 mg Oxycontin twice a day for back pain" and ask me for a refill, I am rather likely to check the veracity of the claim. You come in with a document that says you had your gall bladder removed, I just might believe you (but I'd look for the scar, if appropriate).

        We're not that stupid.

        • by hedwards (940851)

          Around here it's getting tough to get a prescription for those sorts of medications. For one thing doctors have access to pharmacy records from the entire state and for another thing the requirements from the state have gotten a lot tougher than in the past. It's getting to the point where it's more likely for a patient to be prescribed medical marijuana than prescription pain killers. Personally, I'm fine with that, I don't support drug use, but the reality is that I've never heard of anybody dieing from m

    • by robbarrett (84479)

      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.

      You're thinking way too small....

      I would think one of the primary results of this would be the instant creation of a vast array of online services where one could upload the records and see them processed in a variety of way. I also expect that regulation of such services would be a nightmare, since the line between "processing" and "practicing medicine" would be extremely narrow. Security is obviously another issue. On the other hand, in many other areas there have been mechanisms for rating online servi

    • By that logic, open source projects should stop providing source code, too, since most people can't understand it anyway. No need to mention that source code is available - let people ask for it.

    • by vlm (69642)

      While you're at it, block people from obtaining their financial and legal records also, since they'll probably not do anything intelligent with those either.

      Really, I'm mystified at the hostility. I was named in my grandmother's will, and the lawyer executor sent me all kinds of stuff that I'm sure an idiot would never figure out but a reasonably intelligent guy combined with google, pretty much figured out, and dang it, I should get a copy of the will.

      Ditto the financial records, I don't see the hostility

    • by blair1q (305137)

      The idea of "taking them home" is a metaphor.

      They should all be placed in a secure online repository for you to examine and add annotations as necessary.

      Lots of people know enough to know that they didn't receive a breast-reduction when they went in for an artificial knee surgery, but will find those errors in their records only if they actually see their records. And lots of less egregious stuff.

      You'll also be able to tell when your doctor mischaracterized what you told him. Future doctors working on you

    • by tomhath (637240)

      Most folks probably don't know how to secure them properly.

      Ask most people who are having health problems how they're doing and they'll talk your ear off. A patient leaking their own information is not a HIPAA violation. The usual reasons given for caregivers keeping medical records private, e.g. you don't want prospective employers to know about a chronic condition, don't apply to individuals taking their own records home.

  • by Anonymous Coward

    Thought maybe they were implanting chips with health records into patients' hands.

    • by blair1q (305137)

      Don't know why that's funny.

      It's the way it should be.

      The doctor can do a hundred tests to know what's happened to me in the past, or, he can wave an RFID reader over my wrist and populate his database with my history since birth and the interpretations of his predecessors and data on what did and didn't work.

      Anything that speeds up the doctoring process and reduces error in information retrieval is the goal.

  • Could go both ways (Score:5, Insightful)

    by RogueyWon (735973) * on Monday January 16, 2012 @01:17PM (#38714990) Journal

    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.

    • by Anrego (830717) *

      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.

      Yup! As a personal rule I don't google my symptoms any more. If I'm that worried about something, I go see my doctor. The internet can turn a cough into congestive heart failure .. and because the craziest and scariest cases tend to float to the top, it is definitely not the place to reassure yourself that it's "probably nothing".

      Finding more information about something you have, however, I think is still a valid use.. as long as you take everything with a metric tonne of salt, and talk to your doctor befor

      • by khr (708262)

        as long as you take everything with a metric tonne of salt

        No, I think that's a big part of modern health issues... Too much salt! On the other hand, that can speed up conversations with the doctor who can just say "cut down on the salt, exercise..."

    • by Dunbal (464142) * on Monday January 16, 2012 @01:58PM (#38715402)

      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

      This happens now anyway. Please stop trying to protect people from themselves. Paternalism didn't work in medicine, and it certainly doesn't work in government. People are adults and ultimately are responsible for their own actions/inactions. Patient autonomy is a fundamental component of modern medical ethics. Let people live their own life how they want, right or wrong. It's very easy to tell people how to live. How do you feel when they tell you that you are the one who is wrong? Or are you never wrong?

      Yours,

      A physician.

    • by BlueStrat (756137)

      ...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.

      Or, they might discover what their real ailment is, or maybe that none exists, and/or that the doctor is simply prescribing whatever the big pharma sales reps are comping them the most for prescribing this quarter and not what's in the patient's best medical interests.

      Expect a huge push-back against this idea from big pharma and those tied to them, along with those that share common interests and goals in government and the private sector.

      You control people's health and healthcare, you control those people

    • by blair1q (305137)

      >use it to jump to the wrong conclusions, imagining all kinds of ailments that they just don't have.

      Part of a doctor's job is to manage that, and it's simple to tell a patient that looking at parts of the information or looking at it wrong can lead to different diagnoses or diagnoses for things you just don't have. And a doctor that isn't checking for the unusual explanation while at least starting treatment for the common explanation is not actually doing his job either.

      All of a patient's job is to sec

  • 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.

    • by Anonymous Coward on Monday January 16, 2012 @01:22PM (#38715034)

      If that pisses you off, just wait until you realize you've been seeing a chiropractor.

      • by no-body (127863)

        If that pisses you off, just wait until you realize you've been seeing a chiropractor.

        done that - had to redo all X-rays because they "got lost" .....

    • by Synerg1y (2169962)

      Rofl, rtfa > first line. Get them yourself.

  • 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 experie
  • In the an audience of Insurance, Administration, Physician, Nurse, Billing and Legal requirements let's turn _that_ into another product " for sale".

  • by queequeg1 (180099) on Monday January 16, 2012 @01:33PM (#38715164)

    "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.

    • 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.

      • 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 tr

      • 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

    • by bigdavex (155746)

      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.

      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.

    • by khallow (566160)

      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.

    • by RKThoadan (89437)

      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

    • 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."

    • by sribe (304414)

      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 ;-)

      • by queequeg1 (180099)

        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.

  • 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 li

    • by dmr001 (103373) on Monday January 16, 2012 @02:03PM (#38715468)
      As a doctor, I really think of your medical record as mine: what I gleaned from your complaints, what exams I did, who I talked to, and what I thought was going on and what to do about it. I know you are paying for it, but I'm the one doing the work and putting all that medical school to use.
      That said, I think you should have access to it, for free, and modern electronic health records allow that: once I review a result or record I can release it so you can look at it online. I also now document in my charts with the idea that the patient or family member might read it, so in addition to the technical detail I write the plan and diagnosis in as plain language as possible, and send patients home with this at each visit. (More than half immediately lose this paperwork, in my experience.) These systems, naturally, come at significant, expense and require a fair amount of upkeep, so they are mostly available only at larger practices.
      Having worked previously in a developing nation where patients were responsible for keeping their own medical records (on 5 x 8 index cards), I'm glad we don't do it that way here (I'm n the US). I need a secure copy of what's been done to you and what you're taking, and recall having had a lot of trouble reconstructing lost information from the memory of illiterate folks or damaged records that had gotten submerged in open sewers and whatnot.
      • by andyring (100627) on Monday January 16, 2012 @02:16PM (#38715592) Homepage

        Good points, Doctor. However, I do take issue with your opening comment. Yes, your training resulted in the work being done, but I AM the one paying the bill, and it is MY BODY. Yes, you are doing the work, but only because I am paying you for that service.

        It's no different than if I take my car to the shop, list some complaints, and they fix it. I fully expect to be told everything they did, and why, and their diagnosis, so I can keep a record of it. Why? Several reasons. First and foremost, I'm paying the bill and it's my car. And, with that information in hand, I can have the confidence (or lack thereof) that the problem was fixed and why. And I have that information in case I want to do further work myself, or take it to another garage, or have that information with me if I'm traveling and it needs work to show a mechanic somewhere else. Each of these examples is directly applicable to medical records for the same reasons. If I think my doctor screwed up, I can take my records and show them to another doctor. Or if I'm traveling and something bad happens, I can have those records to show a doctor wherever I'm at. Etc. etc. etc.

  • 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 the

    • by vlm (69642)

      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.

      Is it the kind of EMR that is consumer facing, for the unwashed ignorant masses? If so, you're probably right. On the other hand if its the kind of EMR that is doctor facing, for specialists, then the patient's oncologist and/or cardiologist might be burning up the intertubes reading up on them without the patient even knowing. I guess with some services it is not a binary choice, they are the same thing from the same company, just wildly different and complicated login permissions.

      I am fairly certain my

  • by xanthos (73578) <xanthos@t[ ].com ['oke' in gap]> on Monday January 16, 2012 @02:43PM (#38715914)

    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.

    • by Rich0 (548339)

      When would they fill out the chart otherwise? If they have time to fill it out later, why not just fill it out now? They could just spend the extra time with the patient and get anything that comes up resolved before the patient walks out?

      I just don't get it - if before it took 30 minutes with the patient plus 15 minutes in the office, just spend 45 minutes with the patient now.

      For people who can't read English I agree that the benefit is marginal, but I don't think that we can write healthcare policy aro

  • 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

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