Do You Really Want To Know What Your Doctor Is Writing About You?

New research is looking to answer this question by studying what happens when patients have access to their doctor’s notes.

The WSJ says:

A study currently under way, called the OpenNotes project, is looking at what happens when doctors’ notes become available for a patient to read, usually on electronic medical records. In a report on the early stages of the study, published Tuesday in the Annals of Internal Medicine, researchers say that inviting patients to review the records can improve patient understanding of their health and get them to stick to their treatment regimens more closely.

But researchers also point to possible downsides: Patients may panic if their doctor speculates in writing about cancer or heart disease, leading to a flood of follow-up calls and emails. And doctors say they worry that some medical terms can be taken the wrong way by patients. For instance, the phrase “the patient appears SOB” refers to shortness of breath, not a derogatory designation. And OD is short for oculus dexter, or right eye, not for overdose.

The WSJ says you already have a legal right to see your entire medical record, including notes, unless you are a psychiatric patient and your doctor doesn’t feel that it would be in your best interest.

The article also includes a glossery of terms that you might find on your doctor’s notes. We were relieved to find out that “nerd” is “No evidence of recurrent disease.”

What the Doctor Is Really Thinking [WSJ]

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  1. MamaBug says:

    you don’t want “FLK” on your kid’s chart. Translates to “funny-lookin kid” so that if a different doctor comes in to see the patient, they won’t stare in shock at the third nostril.

    • Cait says:

      NOT why they write it, but amusing.

      Abnormal features on a newborn point to possible diseases. It’s an instruction for a follow up and possible diagnosis, my sister tells me. But you have to check the parents’ looks first.

  2. pecan 3.14159265 says:

    If you get the generally accepted terms wrong and are then offended, it’s hardly the doctor’s fault.

  3. dorianh49 says:

    Elaine saw her chart, and nothing good came from it…

  4. tbax929 says:

    I don’t know what my endodontist wrote about me, but when I went a few weeks ago, I walked out because it took so long (over an hour) to be seen.

    I went back today. He saw me immediately and didn’t charge me for the work. Maybe I should walk out on doctors who make me wait more often…

  5. MercuryPDX says:
  6. Hoss says:

    My doctor and hospital system does this. The terminology sometimes can seem frightening if you have a vague understanding of the term. But it you don’t understand the term, a serious assessment will go right over your head. In any event, it’s helpful information particularly if you change doctors. And let’s face it — those that are interested will mostly be educated individuals that want to track their health or do more research

  7. Loias supports harsher punishments against corporations says:

    All those fears are completely bunk.

    It’s been proven that talking about a negative before the other person has a chance to bring it up unliaterally reduces the effect of the negative. In other words, talking with the patient about the conditions the doctor is speculating about during the office visit rather than having to explain them later automatically reduces the patient’s fear and uncertainy of his theories. Based on this article, that apparently doesn’t happen very often.

    The same goes with medical terminology. Rather than having the patient read the notes later, have the doctor go over those notes with the patient in the visit.

    Further, how can knowing what your doctor is thinking about you NOT beneficial? You can’t be a healthier person without first knowing what’s making you unhealthy in the first place, and how to counter it. One of the main reasons people freak out medicine in general is lack of knowledge. Talking to your doctor and reading their notes will only make you more aware and give you greater knowledge of your own body.

    And if your doctor is writing snarky things about you, like your personality or looks, then knowing that empowers you to find a doctor not so assinine.

    I really don’t see how knowledge can hurt you.

    • jessjj347 says:

      I wouldn’t exactly call it talking in the negative, but you make an interesting point.

      Many doctors use a reductive approach, so that their hypotheses are gradually refined in a top-down manner. So they may suspect many “negative” things at first. And interestingly, the way a patient reacts will have an influence on how they decide to continue. For instance, the patient may express adversity to a certain drug or perhaps test that the doctor wants to pursue.

      • Loias supports harsher punishments against corporations says:

        But the patient has to give the go-ahead for any test or treatment the doctor suggests anyway – shouldn’t the patient know WHY they are taking the test?

    • dougp26364 says:

      Obviously you haven’t ever dealt with patients who have high anxiety or focus on ONE word that causes them anxiety/fear. Walk into a patients room and mention the word cancer, then see what happens with their heart rate, blood pressure and their ability to sleep.

      • mythago says:

        Shouldn’t part of your abilities as a doctor include working with high-anxiety patients so that you can talk meaningfully about their health?

        • satoru says:

          You’d be surprised how patients can immediately ‘space out’ or just go into a trance once they hear something bad. Take this

          “Biopsy not needed for tumor”

          The doctor is thinking “the tumor isn’t serious so no need for a biopsy”

          Patient is thinking “F#*$ It’s so bad they don’t even need a biopsy! I’m going to die!”

          When you’re dealing with those kinds of life changing moments patients universally stop listening after “cancer” and hear the Charlie Brown “wonk wonk wonk” for the next hour. Studies have shown that having more people in the room when giving this news, increases knowledge retention significantly.

          There’s also the problem that the patient chart is meant to convey medical information to medical professionals. Patients can have a lot of problems understanding what terms mean, or as in the article, misunderstand terms. Then there’s just basic language issues. Not everyone reads English so that’s another huge problem.

      • Bibliovore says:

        It can be even worse when the term that makes a patient frantic is something the doctor doesn’t think of as concerning, or as meriting reassurance. For instance, a tumor can be benign and totally harmless, but not all people know that — some think “tumor” means “cancer,” period, and believe they’ve got a death sentence when in fact there’s nothing to worry about. I knew someone who was certain for weeks that her doctor had diagnosed her as having cancer, over just that misconception.

    • Fantoche_de_Chaussette says:

      People forget that doctors are professionals that work for us, not some Gods of Health whom we must beseech.

      Do we want to be like Japan, where the medical culture is such that doctors never tell terminal cancer patients about their condition, “for their own good?”

  8. Rachacha says:

    When I was a teenager, my orthodontist had a very open office…all his patients sat in the same circular shaped office. They used to place the “chart” on his supply/equipment table attached to the chair, and when there was a long wait, I would read the chart, remembering the 10+ years of torture that he caused to me. During my first visit with him, it was indicated that I breathed through my mouth (upper palate was too small- rectified by my orthodontic work), but this note was abbreviated with “MOUTH BREATH”. Imagine the horror of a 14 year old going through puberty, struggling with raging hormones, pimples and body odor reading that he had bad breath on his doctor’s chart. It took me several years to realize that he was noting a condition that I had that he was able to fix.

    I would like to see what was being noted in my chart, and I think it would help patients to better understand what was going on, but, the shorthand and medical lingo would freak everyone out.

  9. c!tizen says:

    I think proctologists should be required to submit their notes without patient names, just for the comic relief.

  10. knoxblox says:

    I remember my first day as a hospital clerk/librarian, and reading “patient is SOB”. I began to wonder if I’d hired on at the right place.

  11. NarcolepticGirl says:

    My last neurologist was a bit wacky. Actually, all my neurologists have been.
    Anyway, the last guy was a scatterbrain and he wouldn’t take notes but instead – record notes on his voice recorder thing – right in front of me. And then his secretary would transcribe it and send me a copy.

    I thought that was pretty cool.

    • Coelacanth says:

      Yeah. I’ve encountered a few doctors who do that. I actually think it’s really good. I was also quite happy with the fact they recorded their notes *with* me in the office, rather than waiting a bit later.

      If I were a doctor, I would completely do this. However,now that electronic medical records are becoming mroe the norm, I’d probably be fine typing those notes into the computer since typing speed >> handwriting speed.

    • DorsalRootGanglion says:

      You have a neurologist? That explains…so very much indeed. I’m assuming it’s for the narcolepsy, but maybe he has a friend that can treat you for the crazy.

  12. smo0 says:

    When I was on leave from work, my insurance company would drill me to get the doctor’s notes because the doctor was never available to fax over information – I think it would make communication between insurance companies slightly better in this regard.

  13. T Daniels says:

    sounds like the Hungarian phrasebook “I am no longer infected”
    http://www.youtube.com/watch?v=G6D1YI-41ao

  14. Hooray4Zoidberg says:

    I think WebMD is a pretty good measure of this. I’m typically not a hypochondriac and I almost never go to the doctors but even I leave that site thinking my runny nose and sore throat are terminal.

    • Fidget says:

      I lost my voice for a few days in undergrad and wanted to find home remedies. WebMD told me I either had cancer, leprosy or syphilis. That was my first and last experience with them, not counting Cancer Bingo drinking games. You win if you find a symptom that doesn’t link to cancer.

    • ajlei says:

      While WebMD is a hypochondriac’s heyday, I was able to accurately diagnose my dad’s cirrhosis with it.

      And then he died. :/

      • mythago says:

        I’m sorry :(

      • DingoAndTheBaby says:

        Same here…but appendicitis. And, it’s actually a good thing, too; at first I thought I just had really bad gas. It wasn’t until I looked at WebMD that I thought, “Hrm, maybe I should go to the ER.” The surgeon who performed the appendectomy told me that A. He’d never seen such a terribly enflamed appendix, and B. If I’d been even a hour or so later, it definitely would have burst.

  15. honeybee says:

    Mayo Clinic will send us (snail mail) the doctors’ notes. I have found it very beneficial! The first time they sent the them, I was scared to read it (not a good diagnosis), but it actually made me feel better about it all. Another thing I like about Mayo’s business practices: they send you a detailed bill of what they submit to the insurance company.

  16. Anonymously says:

    Assuming that the notes were available in some text-based format (as opposed to scan image) it would be pretty easy to add context, such as auto-expanded acronyms and hyperlinks to condition information.

    • Loias supports harsher punishments against corporations says:

      Google, Yahoo, and many others already does this annoying thing. I see a link for some random word in an article I’m reading online and that links to a search for that word in other articles. Lame in general, but helpful in specifics contexts like this one.

  17. Slave For Turtles says:

    I saw some notes once. It said that I had a tender abdomen. Tender?! No, I’m ticklish. Poking at someone’s spleen should make the normal person squirm, in my humble opinion, disease or no disease.

  18. sponica says:

    I signed up to get access to the chart notes…and regretted it. Let’s just say I sort of work in the health field, and I use direct quotes whenever I tried to establish how crazy a defendant was or how paranoid one of my residents is. And then I saw the direct quotes in my chart…NEVER AGAIN will I read a chart note!

  19. ellemdee says:

    I would love to be able to access my notes/records electronically. I recently switched doctors and, while she seems great and comes highly recommended, the office charges $1 per page (!!!) if you want a copy of your file or any records. I’m still trying to decide if she’s worth dealing with their exorbitant fees for records.

    And, yeah, I absolutely want to know what my doctor is writing about me. Who wants to trust their health to a doctor that can’t be honest with you? For example, if you’re experiencing chronic fatigue and your doctor pretends to pay attention to you, but writes “lazy” on your chart, it would give you a good idea of how seriously he or she is taking your symptoms. I don’t see any reason why patients should not have at least the option of viewing (and copying) the doctor’s notes.

  20. paul says:

    Glossery? And to think, all these years I’ve been spelling it with an “a”.

  21. jessjj347 says:

    There are already Electronic Health Record systems that are designed for patient input. Although the patients may not see the doctor’s notes in written form, they may see what the doctor has input. I never considered how the patient would interpret notes, because I assumed it was accessed at the point-of-care. Perhaps these records are being accessed when the doctor is not there though? At home?

  22. FreeShaggy says:

    Damn the electronic age. If you could only see the notes your doctor wrote out, you’d never be able to read them to know what they thought about you!

    But this is one of those things that patients should be taking advantage of in the Doctor’s office. Ask questions, know what was prescribed, what it’s for, why you’re taking it, etc.

    Be a good consumer in the health field. The doctor may seem busy, but he’s there to help. Use them.

  23. Sure I could agree with you, but then we'd BOTH be wrong. says:

    I was just recently involved in a similar discussion about hypnotherapists — When a client would want to see their notes, is there a legal or ethical obligation to show them?

    My quick answer was no. For one, we are not licensed medical professionals, and as such, medical laws do not apply, AFAIK. Unless there is a court order, my notes are my own, and I do not have to show them to anyone.

    Further, it could more likely inhibit the progress the client is making, since they may not understand my notes, and the notes not only contain the things they tell me in session, but my course of action as well…

    Wondering what the thoughts here are on this?

    • koalabare says:

      If I asked to see the notes about me and the provider declined, it would not build a trusting relationship.

    • Duke_Newcombe-Making children and adults as fat as pigs says:

      Were I a “client” of yours, the instant I understood this was your position, you would not longer be my therapist. Using a legal technicality to avoid doing the right thing is never clever in the long run, Sir.

      • Sure I could agree with you, but then we'd BOTH be wrong. says:

        Not using a legal technicality – I’m referring to the ethical side — Much of what I write can be so easily misunderstood, as I write down not only key points (using my own shorthand) of what you’re saying to me, but actual courses of therapy, which could more often than not do more harm than good.

        At all times, my number one priority is my client’s best interests. If I think that seeing the notes (and nobody has ever asked) would do harm, why would I want to do that to them?

  24. kutsuwamushi says:

    I have a feeling that reading my medical record would just make me angry. Woman with unidentified chronic illness that seriously impacts her life trying to get it taken seriously = hysterical in many (especially older male) doctors’ eyes. I’ve switched doctors more than once when that bled over into their behavior. I’m sure that what’s in my record, which they didn’t expect me to see, is worse.

    I almost don’t want to see.

    • sadkitty says:

      I also have had the term “hysterical” on my record. It happened after being told I should have a child to solve my chronic illness, I was a college student with no money at the time. I yelled at the doctor for suggesting such an irresponsible idea… it was pretty awful. I filled complaints about that doctor but nothing happened.

      And of course there were the years of being told that I was just depressed or my favorite “attention seeking”-yeah I’d rather pay for a visit to the doctor than have money for food for that month. Turns out I had Lyme disease for 20 years. Now of course my problems are possibly incurable. At least I have documented proof I’m not hysterical, depressed, or otherwise mentally ill. You begin to doubt yourself after a decade passes.

      I have a great doctor now. She gives me a copy of everything, I don’t have to ask for it either, it’s just part of her normal practice. And of course she found the Lyme disease.

  25. xenotoxin says:

    Glossary (see article) not “glossery (sic)”

  26. econobiker says:

    The doctor is writing nothing- he is calling in and recording his notes which then flit to the other side of the world. There some Indian (yes, like Indian Ocean India) transcriptionist making 3¢ per line is transcribing it for the electronic record. Then an overworked and underpaid US quality person is supposed to be reviewing it but usually ends up re-transcribing it since the Indian did so badly…

    And it is perfectly legal under HIPAA since you signed the form that said “our medical practice may have trusted vendors working on your records.”

    Funny though that the US Gov’t military hospitals and VA hospitals require all transcription in the US only. So our elected officials have yet another level of insulation from the “real world” along with their gov’t pensions etc…

  27. NickelMD says:

    If you are a pretty sane person, have a good relationship with your current doctor, have no diagnosis of any type of anxiety disorder, haven’t fired more than one doctor in your life, and don’t have one of the panoply of diagnoses that have been repeatedly invalidated by allopathic medicine (ex: multiple chemical sensitivity, chronic lyme, morgellons disease, mercury toxicity despite non-toxic mercury levels, etc), then yes, yes, a thousand times yes read your chart. Do a little homework and figure out what everything means. Keep a list of all your past history, current problems, meds and allergies – and have a reasonable understanding of all of these.

    If however you are going to worry yourself into a hole, think medicine has a grand conspiracy to pretend your ‘illness’ doesn’t exist and deny you the whackaloon treatment some dude on the interwebs told you that you need, think your doctor is out to get you, or are just plain bat-shit-nuts please have the insight to see that and save yourself and your provider a lot of grief and resist the urge to peek.

    Or if you do, please fire me first, k?

  28. energynotsaved says:

    I use to live with a pain physician. He made a ton of money off of women who were diagnosed with fibromyalgia. Then, he would come home and laugh at them because he said fibromyalgia was a made up disease for crazy women. However, to their faces and in their records he was careful to only record facts. He knew he’d be ruined if his real opinions were ever discovered.

  29. dougp26364 says:

    The abbreviation of SOB was replaced long ago by SOA (shortness of air). Unfortunately, some in the medical field didn’t seem to get that E-mail.

    • Duke_Newcombe-Making children and adults as fat as pigs says:

      …and many patients leave the office confused, thinking they’ve been diagnosed with Service Oriented Architecture…

    • mwshook says:

      I have NEVER heard of SOA. But, I also never write SOB, for the reasons above. I have also never heard a patient tell me “I am short of air.” If I am writing down the patient’s verbatim complaint I will write “short of breath.” If I am writing what I’m thinking, I put “dyspnea.” But I’m a fast typist.

    • kdui says:

      I’ve never heard that SOA = shortness of air.

  30. shepd says:

    You may not be entitled to those records if you are adopted and you live somewhere stupid. I know it’s not part of the US, but adopted persons in Ontario couldn’t get medical records until last year, period. I do know that some US states are similarly prejudiced, so I wouldn’t be surprised if they had similar laws.

  31. GuyGuidoEyesSteveDaveâ„¢ says:

    I think this is good. Many times people mis-remember what their visit to the Dr. was like, and as they retell it more and more, it becomes even less based in reality. I.e. sometimes a Dr. tells a patient that they should see a therapist because their problems seem to be from stress, and they aren’t equipped to deal with that. The patient will hear this as, “you’re nuts, incurable, see a shrink!”

  32. Extractor says:

    Guess its time for prewritten computerized generic statements. I’m sure patients will try to sue us for libel otherwise. They will also find out that we suck in grammer and spelling. Im sure they would love to see PITA (Pain In The Ass) on their record.

  33. farcedude2 says:

    I had to get a copy of my records to take from one hospital to another, it was amusing for me to read mine. But, my doctors like me, and think I’ll live for a while.

  34. TonyK says:

    In my wife’s case, the doctor has some basic facts wrong such as when a disease started, etc. That has implications out the backside.

  35. mwshook says:

    (My office is computerized)
    I always type up my notes assuming that my patient will read them some day.
    Like most offices, my practice will print out patient medical records for a fee, and give them to the patient within the 30 days required by law.
    But if a patient says “Can I get a copy of today’s note?” I never hesitate. All I have to do is hit print. I feel it would be pretty weird if I said “No, it’s a secret.”
    As long as you keep it strictly to facts and your honest opinions, I think it would rarely cause a problem. There are times where it may make patients upset, but if your note is your professional best, then it shouldn’t be a huge problem.

  36. mythago says:

    Here’s another reason to read (and perhaps get copies of) your chart: some doctors and nurses, after a screwup, will go back and alter a patient’s chart to pretend that tests that weren’t done actually did get done, or will put down that a patient was given full disclosure and consent when no such thing happened, etc.

    • satoru says:

      All the more reason to go with an EMR. These record when tests were submitted and when consent was given to procedures. Assuming you have a decent workflow, its possible to scan in signed consent forms as part of your EMR. It’s not perfect, but with an EMR is neigh impossible to remove data from a chart you put in, or to retro fit data points in before the current day.

      If something bad happens the very first thing that gets done is an audit report of every single person that touched that patients record, what they did and when they did it. You might recall a few years ago, some retarded hospital staff were pulling up records of George Clooney and someone else and promptly got fired. HIPPA violations are serious business and your ass will be out on the street faster than they can clean out your locker and throw the box outside.

  37. thingsbuilt says:

    I got a glimpse of my hospital emergency admit report, which stated “male, caucasian,
    appears older than stated age..”

    The humiliation!

    (even though it turned out to be cancer, and also a bad hair day)

    still, I’d rather read my credit report (for a good laugh) than my medical file.
    Occasionally, I would sense cynicism, or doubt about about my stated symptoms.

    steve

    • satoru says:

      I know it sounds weird but especially in the ER, you get lots and lots of crazy people. People looking for drugs, or god know what else. Say you’re 20 and you look more like 30. Sure you could just look older than you are, which is great for getting booze :) But on the flip side you could be a mentally unstable patient as well. People lie in the ER all the time. They have to make note of these oddities just in case it means something down the line. Somewhat like saying “I fell down the stairs” when the bruising is more consistent with a fight kind of thing.

  38. wee_willie says:

    I am a medical transcriptionist, and one of the doctors I transcribe for says some funny things. I’ve never heard him say anything really derogatory about a client, but he reports the things they say exactly as they say them. He also adds his little comments, but if they might be misinterpreted by a client, he tells me not to print them. He has names for certain restaurants and the problems they cause in patients, e.g. Taco Bell is Taco (word that rhymes with bell). I am this doctor’s patient, and he even says funny things about me in his notes.

  39. ash says:

    I work in the medical industry where I look at a TON of patient records. I’ve even looked at mine before, too. It would be hugely beneficial if patients, especially those with multiple chronic conditions, could access their records easily so that providers dono’t have to do a lot of “digging” and trying to find certain clinic notes at each appointment.

    I can see how this would cause problems for providers, too, but it’s absolutely absurd how much it costs patients to get their own records. $1 per page is typical and a few weeks of backlog before you actually get them.

    Some clinics have instituted a After Visit Summary that each patient is required to receive after each visit. It has current meds, instructions/summary of visit for patient, etc. These can be super helpful for patients.

    • johnva says:

      The whole medical industry seems to have a lot of very antiquated practices for an industry that deals with a large volume of information. Paper records are not a good way of organizing or transferring information.

      (Although of course I understand why: the same things that would make going all digital a good thing also make it a daunting task to deal with all the complexity and standardize everything, etc).

      • satoru says:

        Antiquated doesn’t even begin to describe health care. Your fancy EMR records are most likely stored on the awesome non-relational MUMPS database, created in the 60s. The applications are written in tiny 16k chunks strung together with goto statements. Despite your data being in a ‘database’ to actually do any real database work you have to extract whatever data you want manually into a real database like SQL or Oracle, THEN run a report off that.

        Other healthcare vendors are no different. Many won’t allow you to run their application in VMware. Despite their shitty application requiring 10+ non-redundant non-clusterable servers. Or laugably, one vendor claimed they supported clustering… a single-node cluster! A single node cluster? WTF.

        • johnva says:

          Any idea why that kind of nonsense persists in healthcare? Why have they not modernized along with the rest of the economy? I mean, it would seem that if your organization is hemorrhaging money, like a lot of hospital systems are, you would want to look at how to make your practices more efficient.

          Is it just some sort of network lock-in where everyone is stuck with horrible, old, broken “standards” merely because everyone else is using those same standards? Or what?

  40. johnva says:

    My doctors have always been happy to give me whatever records or notes I want, and they usually just volunteer it. But they are aware that a) I don’t overreact to things I don’t understand, b) I’m capable of looking up what things means on my own, and c) I like to know all the technical details of things.

    I think it’s generally a good thing for doctors to give more information to patients. But the points in this article are definitely good ones, as not everyone has the ability to process the information properly. In those cases, the doctor probably needs to spend a little more time on patient education.

    Also, another issue with these charts and notes is that they could potentially be used against you by an insurance company (at least until the prohibition on preexisting condition discrimination kicks in). So it’s in your interest to check whether everything is accurate.

  41. Blious says:

    Absolutely not

    I would over-worry about his guesses, be irate about any accusations, and wouldn’t like to not understand other notes

    No way