OpenNotes: Good intentions gone awry

opennotes_logoOpenNotes is “a national initiative working to give patients access to the visit notes written by their doctors, nurses, or other clinicians.”  According to their website, three million patients now have such access, generally online.  Participating institutions include the MD Anderson Cancer Center in Texas, Beth Israel Deaconess in Boston, Penn State Hershey Medical Group, Kaiser Permanente Northwest, and several others.  Patients with a premium account in the My HealtheVet program at the VA have access to outpatient primary care and specialty visit notes, discharge summaries, and emergency department visit notes.  The New York Times recently ran a mostly celebratory piece on OpenNotes as applied to mental health visits at BI Deaconess (“What the Therapist Thinks About You“), garnering over 350 public comments.  Significantly, many of these comments expressed annoyance with any mental health professional who cited potential drawbacks — despite the fact that BI Deaconess doctors who actively participate in OpenNotes concede that such openness may be detrimental for those with “psychiatric or behavioral issues” (e.g., see this promotional video, starting at 2:15).

The notion of sharing clinical notes with patients enjoys populist appeal.  On a self-report survey with no control or comparison condition, patients reported that OpenNotes helped them remember what was discussed during visits, feel more in control of their care, and improved their medication adherence.  Advocates also say it improves communication with patients and can correct factual errors in the record.  However, the strongest argument seems to be that patients like it.  Defenders repeatedly invoke “transparency,” implying that the status quo is intentionally obscure and aims to hide something from patients.  Some of the rhetoric has a defiant, even self-righteous tone: one promotional video (at 3:16) features a patient who pointedly declares that she’ll never be refused this access again.  And there’s no clear endpoint: about 60% of the patients surveyed in the OpenNotes study believed they should be able to add comments to a doctor’s note, and about a third believed they should be able to approve the notes’ contents; the overwhelming majority of participating physicians disagreed with the latter.  If OpenNotes is widely accepted, it will be increasingly difficult to draw clear lines regarding the authorship and authority of clinical notes.

Fifty-five percent of eligible primary care doctors declined to participate in the OpenNotes study cited above.  Of those who did participate:

Several doctors struggled with the notion of a one-size-fits-all note, arguing that one document cannot address the needs of billing, other doctors, and patients.  A few changed their own use of the note; for example, eliminating personal reminders about sensitive patient issues, excluding alternate diagnoses to consider for the next visit, restricting note content, or avoiding communication with colleagues through the note…. A substantial minority reported [changing documentation, in particular when addressing potentially sensitive issues], including their reported change in “candor.” For example, some doctors reported using “body mass index” in place of “obesity,” fearing that patients would find the latter pejorative.

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“Progress note,” not “visit note,” is the traditional term for a physician’s written entry into a patient’s medical record, documenting an outpatient or inpatient encounter.  (OpenNotes advocates may find “progress note” too quaintly optimistic to be publicly acceptable.)  Physicians write other notes for other purposes, including admission notes, procedure notes, transfer notes, discharge notes, and so forth.  Additionally, many notes are written by nurses and a wide variety of other clinical personnel, particularly in inpatient settings.

The traditional format of a progress note documents (1) symptoms and (2) physical examination, including lab test results, obtained by the physician, (3) his or her differential diagnosis, and (4) the next steps, such as further exams, tests, or treatments, that follow therefrom.  Medical students are taught to write SOAP notes as an acronym for these four components.  Such notes assist in performing and archiving medical work, much as a scientist’s laboratory notebook records the design, data, and results of experiments.  Progress notes were not designed to be a legal defense against malpractice suits, justification for third-party payment, quality-assurance tools for health institutions, or educational handouts for patients.  Yet these notes now serve many masters, resulting in excessively time-consuming documentation that squeezes out face-time with patients, and is increasingly cumbersome as a clinical tool.   Some of the additional trade-offs in adding yet another stakeholder, the patient reviewer, are cited in the quotation above, and cannot be casually dismissed as balderdash by defenders of OpenNotes.

OpenNotes presumably works best in primary care, and with an electronic medical record that expands abbreviations (and/or provides templates), corrects spelling, and produces legible output that patients can access online.  In contrast, notes with technical jargon by specialists such as ophthalmologists, anesthesiologists, radiation oncologists, and many others would be incomprehensible unless radically altered to be more patient-friendly.  Less “connected” practices would similarly be left out.  But even in the best-case scenario, progress notes are a poor tool for doctor-patient collaboration.  By nature they are shorthand, telegraphing complex medical reasoning in a few words.  Old-fashioned discussion is paradoxically superior for assuring that doctors and patients are “on the same page.” Written material designed specifically for patients is better suited for reminders about what was discussed and how to take medications as prescribed.

The real thrust of the OpenNotes initiative is less pragmatic.  Many patients want to feel more in control of their care.  In addition, doctors aren’t trusted as profoundly as we used to be.  If given the chance, many patients will gladly join the ranks of those who look over our shoulder.  And of course, if the traditional use of progress notes is framed as paternalistic or elitist, reforming these notes into something “democratic” seems like the only sensible thing to do.  The enthusiastic fervor to empower patients in this misdirected way (further) dulls a useful documentation tool which is no more inherently elitist or paternalistic than the work notes of a car mechanic or the recipe notes of a chef.  Everyone feels good about this newfound “transparency.”  And that, apparently, is what really counts.

These considerations apply doubly in the case of mental health notes.  My colleague who writes the Psych Practice blog wrote a response to the New York Times piece on sharing therapy notes.  I agree with her completely.  I’d only underscore that psychotherapy based on psychoanalytic and psychodynamic principles depends crucially on gauged disclosure and the timing of verbal interventions.  These treatments anticipate and rely on the reality that the perspectives of therapists and patients inevitably differ, and that this discrepancy is not a simple error or miscommunication, but instead is the engine that drives psychological change.  Arguing for transparency in such treatment is tantamount to wishing that these therapies disappear (some critics will readily acknowledge this).

The relationship between doctors and patients should always be collaborative, but it is never equal.  One party is ill and needs help, the other offers expertise and resources the other doesn’t have.  “Giving everyone a say” sounds democratic, but medicine isn’t practiced democratically.  Try asking a car mechanic or a chef at a fine restaurant (or your child’s schoolteacher, or an architect, or a police officer…) if you can share in their work-flow and decision making.  Most will initially appreciate your interest and offer you an overview.  A kind one may let you look under the hood.  However, very soon you will be told that you are in the way — that you can watch intently or enjoy a good result, but not both.  There is nothing paternalistic about this, it’s how skilled workers do their jobs.  When reminded that this applies to physicians as well, and once the thrill of the “forbidden” behind-the-scenes look wanes, we will see that the remaining advantages of OpenNotes are better served by other means.

14 comments to OpenNotes: Good intentions gone awry

  • Agree with your stated concerns. Even without “open notes” there are situations where patients complain about the medical record and want it changed. There are usually mechanisms for getting concerns in writing in the medical record currently without editing every note. Many clinics print out the basic PLAN section of the EHR note for every patient visit. I cannot imagine people sitting on their home computers reading all of the notes in their records. The premise is good for Seinfeld, but not for clinical care.

    Even that assumes that the notes that are being read are coherent. The current EHR notes I get from just about everywhere are atrocious. They are designed for E&M coding and documentation by physicians who have very limited time to fulfill both the billing elements and move on to the next patient. I am sure that any patient that gets a telephone book sized printout of their hospital records probably realizes how little useful information they contain these days.

  • AA

    Dr. Reidbord,

    Thank you for writing about this issue.

    Last year, I saw a specialist (not a psychiatrist) who sent me a detailed report on my initial visit which I greatly appreciated since I had not requested it. Good thing this person did because I was horrified at what she attributed to emotional issues that was totally incorrect. I did send a letter asking that various issues be corrected but never heard back from her.

    While I never asked for my psychiatrist’s notes when I was taking psych meds or even when I was done, many people have and again found the records riddled with inaccuracies, some of them extremely horrific. In that light, it is totally understandable why patients would feel the need to come across as looking over doctor’s shoulders, particularly since with EMRs, other medical professionals have access to these records and as a result, might be extremely biased towards a patient which can result in inferior care.

    Regarding the comparison to a car mechanic, he may think I am a nut case for various reasons 🙂 but the difference is he isn’t going to document his feelings in a medical record that could affect my future care.

    Anyway, I definitely don’t want to be looking over doctors shoulders as I have alot better things to do with my time than read medical records. But until the relationships are truly collaborative and not patronizing to the point, you are going to have more patients rightfully wanting access to these records.

    • Your comment allows me to clarify two points. First, a consultation note (e.g., the detailed report you received from the non-psych specialist) is a work product. It makes sense to share these routinely with patients, who after all, paid for this product to be created. I see such reports as quite different from progress (“visit”) notes, which are not work products, but tools to get the work done.

      Your comment also underscores the real motivation behind OpenNotes. Collaboration is all well and good, but there are far better ways to collaborate than poring over medical records. The main benefit of OpenNotes is monitoring a mistrusted medical system. In this sense it is a symptom of a system that no longer serves the needs of its users — certainly not their emotional needs, and sometimes not their medical needs either. I agree that under these circumstances, many patients will want to review these notes. Thanks for writing.

  • Claire

    I work at one of the hospitals where medical records are open to patients. I have never had any problems from what I’ve written. In fact, no patient has ever said a single thing about anything I’ve written. I don’t feel like patients are looking over my shoulder. I am respectful and stick to the facts; that’s worked well for me. I have never omitted information for fear a patient would read it. I think it’s great for patients, because so often the visits are very brief and patients don’t always have time to ask everything they want to ask. We throw a lot of information at them in what are often very stressful times, and this gives patients the opportunity to go back and re-cap what was discussed. Not every patient decides to get a login code and gain access; I’m not sure what percentage actually do. I have no problems with this, and I don’t think there’s anything to worry about.

  • EastCoaster

    I get my care at one of those hospitals and like the OpenNotes feature. I don’t know whether it makes sense to have open access to mental health notes, but I it’s been helpful to have much of the EHR available. It was easy to get a copy of my vaccination record for work.

    I couldn’t get access to my ER notes, and I don’t think that the PCP’s office could easily either. I wasn’t able to tell the ENT that I saw outside of the hospital’s network what dose of vicodin had been given to me and that it made me throw up. Nor was it easy to tell the other affiliated ER what dose of Zofran I’d been given for the vomiting which was probably induced by the vicodin but may have been due to a gag reflex from the horrible rhinorocket in my nose.

    I know that when my PCP sent me to the ER for the epistaxis, she requested that the ENT on call be paged using a doctor’s note message in the system. She told me to ask the ER doc to do that too. They still refused. I don’t have access to that note.

    Finally, there is also a copy of the letter my PCP wrote on my behalf to my employer asking for an ergonomic assessment in the EHR. Having access to that and being able to print that out is enormously useful.

    • My criticism of OpenNotes only applies to progress notes (“visit notes”). I have no objection at all to doctors sharing vaccination records, medication records including prescribed dosages, copies of letters, etc. In fact, it’s very beneficial to do so. Thanks for writing.

  • Borderline

    I have no problems with progress notes being viewed. I used to think things like progress notes were professional and patient centered (don’t work in health care). But I have been really shocked to discover just how much of the notes have to do with how the doc feels about the patient. It’s not even very scientific. I was on psych practice’s blog and I remember one commenter’s response about the pdoc who wrote that he was “childish” for crying, and his statements were “doubtful.” He isn’t the only person I have seen online who got a look at a medical record and were in shock at some of the things written. Entries where the the pdoc thought they were lying or manipulative were never even discussed during the course of therapy. One guy who was inpatient thought he really clicked with the pdoc he was working with. Thought he was the coolest doc. And then he saw the medical record after discharge. The pdoc had written all kinds of awful things about him.

    To give one really chilling example that has forever jaded me, a woman online with chronic mental illness was receiving care from a pdoc at a community mental health clinic. She made “friends” with a volunteer from NAMI who would help patients at the clinic, arrange rides for them, etc. Well, one day the patient confided in the volunteer that her pdoc didn’t like her and the doctor/patient relationship wasn’t going well. The volunteer asked if it was ok if she had a word with him to try to smooth things over. A phone meeting was set up and the doc privately spoke to the volunteer about the patient. Later on, that same patient went to court to attempt receiving disability benefits for mental health issues. The judge had access to the medical record, and the first thing on the judge’s agenda was that phone call the pdoc had with the volunteer. He had typed an entire summary of the phone call, and the volunteer had said all kinds of awful things about her. The patient had no idea the volunteer felt that way about her. She called her a liar, extremely manipulative, selfish…I didn’t even know docs wrote stuff like that in the medical record. I would think if the volunteer was saying stuff like that, he would have cut the phone call short, immediately told the patient, and asked if this was the kind of stuff she wanted to be in her medical record.

    Just saying…kinda cautious now after hearing all these stories.

    • I have no problems with progress notes being viewed either. Patients already can request and see them. I object to making this a routine part of a physician’s work-flow, for the reasons given in the post.

      Nearly everyone exercises some diplomacy at work. The private thoughts of waiters, store clerks, housekeepers, tax advisors, and dentists are not always positive towards us. Nonetheless, most workers at least try to be pleasant, and their negative thoughts, if any, stay private. They are not written into an official record. So on the one hand, I agree that doctors should not write subjective or unsubstantiated opinions in medical records. That is, it’s unrealistic to expect doctors to like every patient, but it’s not unrealistic to expect that we keep it to ourselves. (The same argument can be made about the personal opinions of judges toward defendants: whether the judge finds the accused repulsive or likable shouldn’t affect what happens in the courtroom — although court records show that it clearly does. It’s very hard to suspend human nature when humans are involved.)

      On the other hand, uncomplimentary data and conclusions in a medical record are not only acceptable, they can be crucial. In your example the NAMI volunteer told the pdoc (psychiatric medication doctor) certain things the patient wouldn’t like or agree with, and the doc put it in the chart. Yes, we do this all the time. A family member calls to say our patient flushed all his meds three days ago and is now acting strangely. We learn from other sources that our patient was arrested on drug charges. A “pdoc” may collaborate with a psychotherapist, and in doing so may offer ideas and opinions their shared patient wouldn’t like. Medical training at a fundamental level teaches us to pay attention to, and not turn away from, bad smells, ugly wounds, habits that are not mentioned in polite company, and plenty of issues patients don’t offer us right up front. Rarely does a patient come in complaining of being a selfish, extremely manipulative liar. Yet we’re not free to ignore that possibility, particularly in psychiatry. Recording this allegation from someone else, or concluding it to be true based on additional evidence, may clarify a diagnosis such as alcoholism or drug addiction, may help us talk with the patient, or may warn other medical providers to be a little more careful than usual accepting what the patient says. This turns out to be a good example of how progress notes can be useful work tools for physicians, but not very good as explicit tools for doctor-patient collaboration. Thanks for writing.

  • Borderline

    “This turns out to be a good example of how progress notes can be useful work tools for physicians, but not very good as explicit tools for doctor-patient collaboration.”

    Actually, I thought it was a really good example of how totally open access to progress notes via computer would have benefited doc/patient relations. The patient deserved to know that her “friend”, who had supposedly only contacted the doc to help her make nice with him, was backbiting her. They could have talked about it, and she could have had a chance to defend herself. If he still thought she was awful, she could have asked to see a different pdoc. Unfortunately, the pdoc kept it a secret and she only found out later in court. She was denied social security based on that conversation.

    I was surprised by your response, because a volunteer like that would be a red flag for me if I were a doctor. At least I imagine so. It’s already unusual that she offered to be so generous and speak to the pdoc. I have family members who won’t take the time to do that. But then she trashed her? Remember, she is not an objective psychologist or social worker. She is a volunteer who made friends with the patient. This isn’t her job or family obligation to speak with the doctor. I really think that I would have terminated the conversation and told her it was totally inappropriate. I then would have told my patient exactly what happened with the volunteer and asked if she had anything to add to those allegations.

    If I had the authority, I would have asked the volunteer not to return. That’s REALLY creepy to buddy up to a patient, say you’re going to try to help, and then make it worse. I think we can assume she implied to the patient that her conversation with the pdoc would be positive. Instead, she just made him more suspicious.

    • A doctor shouldn’t automatically accept a NAMI volunteer’s opinion. However, recording that the volunteer said something is not the same as endorsing it. Medical records do not exist to help a patient learn whether someone is really her “friend.” They are written to get medical work done. Moreover, doctors are not judges (“triers of fact”), and are not obliged to give anyone “a chance to defend herself,” although often this is clinically useful.

      The doctor should have made an independent assessment, which may or may not have included telling the patient what he heard. Many patients have creepy spouses, creepy relatives, and REALLY creepy friends. Most of the time we shrug our shoulders and say it takes all kinds. If the doctor thought this particular volunteer was especially unreliable, had an ax to grind, etc., he could have told the patient as much. (This is not his job, although sometimes doctors will alert patients in extreme cases.) Apparently he didn’t. He also could have added his own comment to the note about the phone call, saying he did not agree with the volunteer, or did not share her opinion. Apparently he didn’t do this either. I can only conclude that he agreed with what the volunteer said.

      As I see it, this boils down to a patient who felt betrayed because she was refused disability benefits based on her doctor’s documentation. The one thing missing from this analysis is whether the record was accurate. It’s not “awful” to accurately record that a patient repeatedly lies and manipulates, and it’s not a successful outcome if the patient switches doctors after finding out, or gets disability benefits based on falsehoods. Conversely, if the volunteer offered bad information and the doctor believed it, the fault lies with the biased doctor, not the volunteer. I don’t see how OpenNotes helps in either case.

      • Borderline

        I am on disability. When you apply for disability, the state has you independently evaluated by a clinician of their choosing. They also look at the documentation from your personal doctor. Your personal psychiatrist, or whoever, is supposed to be on your side. The decision of whether or not you get disability, from my own perspective, weighs heavily on what your own doctor’s think. If the doctor working for the state sees that your treating psychiatrist thinks you are gravely disabled, he or she will be inclined to agree with that assessment. I didn’t even get evaluated for very long by the state doctor. He had my medical record, he asked some questions or his own, and pretty much just rubber stamped what the psychologist and psychiatrist were saying. I didn’t even have to go to court to get it.

        That is why open notes is essential (in my mind). I remember the pediatrician who was always on shrink rap long ago saying that he just shreds disability requests if he doesn’t think the kid should get it. If the parents think their kid really needs disability, they can go find a pediatrician who will side with them. That sounds harsh, but that to me is actually the best approach. I could understand why a doctor would try to help a patient get disability, but I don’t understand why they would try to interfere with the process.

        Regardless of who is right (doctor or patient), the patient needs to know what’s in those notes for disability, because your own doctors are supposed to back you up. Otherwise, it’s just a waste of time even applying. If disability is not an issue, and it really is all just about treatment, then the patient needs to be sure they are on the right track with the doc. What if you went to a psychiatrist and then you found out that he suspected that you are a psychopath? You know your not one, he has never brought it up his suspicions you, but he seems to think so. He even has your “buddy” agreeing with him (who needs enemies with friends like that?). You should find that out immediately so you can terminate treatment and find a doctor who can help you. It’s about the patient’s right to get better.

        I don’t listen to backbiting, and I don’t see why doctors should either. It’s a morals thing. And everyone should have the right to defend themselves against slander (even if it’s only perceived and not reality).

        • “Your personal psychiatrist, or whoever, is supposed to be on your side.” No, he or she is supposed to be on the side of the truth. It is entirely possible that a psychiatrist may suspect a patient has psychopathy (or some other emotional condition) when the patient “knows” otherwise. You write as though there’s no special expertise a psychiatrist brings to the table; his or her only role is to rubber-stamp what the patient already knows, in order to get the disability paperwork in order. And that a patient’s “right to get better” hinges on finding a doctor who says what the patient already thinks.

          When patients ask me to fill out disability papers that I don’t consider warranted, I tell them about my reservations. I don’t “just shred” anything. Occasionally they leave in search of a more agreeable form-completer, more often they ask me to go ahead anyway. I fill out the form honestly, which is to say as accurately as I can. That’s my job — not to bend the truth and trade away my professional integrity. Since my job is to do what is right and not necessarily what the patient wants, I’ll point out once again that OpenNotes hinders, not enhances, my ability to do my job.

          I think we’re at the point where we’ll need to “agree to disagree” about this.

  • Borderline

    I never said that psychiatrists don’t bring expertise. I’m sorry if the way I phrased things hurt your feelings. I meant that the psychiatrist and psychologist I saw through private insurance evaluated me with their expertise, and the psychiatrist who worked for the government rubber stamped what they had already diagnosed.

    It’s not about finding a doc who always agrees with you. When patients are concerned about diagnosis, or think they may be on the wrong track, they typically get a second opinion or change doctors. That’s not unusual. But if they don’t know the doc disagrees with them or is on a totally different train of thought, they won’t be likely to seek other input…until it’s too late.

    I’ve had instances where I’ve disagreed with docs, and sometimes it can be very beneficial. Notably, I’ve had instances where both my doc and I were wrong, and the second opinion or referral to another specialist revealed a completely different diagnosis. Sometimes two heads are better than one and three heads are better than two.

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