OpenNotes 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.