Happy 2025! The TikTok politics of medical note taking and what's next for Side Effects
A biweekly Friday column and more
Some months ago, as I wrote about here, a team of doctors warned that, in the rush to rely on AI for medical note taking, far too many policymakers and medical professionals neglected to consider that note taking entails vital clinical reasoning on the part of doctors. Writing in the New England Journal of Medicine, they argued that, in outsourcing note taking to machines, the American medical system will almost inevitably suffer from a widespread erosion in clinical reasoning among physicians and others.
On January 25, NEJM published another, far less serious op-ed on medical note taking, titled “Listening to TikTok—Patient Voices, Bias, and the Medical Record.” This was written not by physicians, but by an English PhD who is now an assistant professor of bioethics at Case Western University, Lindsey Grubbs, along with Isabel Toler, a 2024 BA/MA graduate of the same institution.
The article examines a TikTok trend of ridiculing or lamenting medical notes; some examples:
In one video, a person laughs in front of a screenshot of the phrase “High risk homosexual behavior,” with the caption, “WHY DID MY DOCTOR PUT THIS ON MYCHART” and several crying emojis (@findingricky; July 25, 2023[]). Over an expletive-filled audio track, a person in another video puts a hand over their mouth below the text “me reading MyChart results.” The screen behind them focuses on the phrase “habitual aborter” (@diary0fabratt; February 22, 2023). Content creators, who often use humor to critique the language of medical charts, sometimes acknowledge the conventions of clinical terminology, yet they remain frustrated: @diary0fabratt writes in a comment, “Yes I know [habitual aborter is] the medical term [for recurrent miscarriage]. However it is heartbreaking to read.”
Grubbs and Toler also take aim at euphemisms; one medical record described a patient as “generously proportioned,” for example. Other TikTok accounts object to wording that may suggest the doctor doesn’t agree with a patient’s perspective (“My doctor wrote ‘patient CLAIMS to eat healthy and exercise’ EXCUSE ME”). Still others deem their notes to be too detailed: “one video features a person dancing to the lyrics, ‘I’m thin, I’m blonde’ and flipping their hair in front of a chart reading, ‘Patient is a pleasant white female in NAD [no acute distress]. She is wearing a UF [University of Florida] sweatshirt and black leggings. She has long blonde hair’ (@michellemmt; December 6, 2022).”
Grubbs and Toler argue that this trend highlights “common and often preventable failures in clinical communication. In an era of easily accessible electronic medical records, they illuminate the disconnect between the norms of clinical language and the experiences of patient audiences, thereby offering lessons for making care more patient-centered.” They go further, citing a study that found "1 in 10 patients reading notes felt judged or offended by the content. One respondent wrote, ‘I wasn’t offended. It was actually betrayal.’”
In Grubbs and Toler’s reading, these patient complaints are, first, a problem, and second, the fault of medical doctors. They argue that it is the responsibility of doctors to adjust their wording to better account for patients’ potential sensitivities. This suggestion is absurdly shortsighted. It is also cruel.
Back in June, I wrote about ways in which the 21st Century Cares Act, which mandates making medical-test results instantly available to both doctors and patients simultaneously, has resulted in unnecessary panic and confusion for patients as well as bewilderment on the part of doctors. The job of a doctor is not simply to receive and review test information in a mechanical way, but to contextualize it for particular patients with particular needs, in order to best guide their care.
Patients now receive bad news via app, without meaningful medical guidance, and increasingly channel their fears or frustration toward their doctors. Doctors, meanwhile, often wish they could have delivered the information in the first place, in a clearer and more humane way than app notifications allow for. Writing in NEJM in March 2024, Dr. Benjamin Vipler noted that doctors “now feel they must race to convey results before their patients read them,” citing a study showing that most clinicians said immediate release of test results to patients “is more confusing than helpful.”
While research suggests that patients still prefer this instant delivery method, Vipler argues that patient preference is not the only important consideration.
Much the same could be said about medical notes, which have longstanding and particular purposes—to allow doctors to communicate plainly with one another, and to allow them to capture and crystallize their own thinking about their patients. As one physician explained to me, vivid or detailed language can help doctors recall a person more fully, “putting you in the middle of the conversation you had a month or two ago, the experience of the meeting.” Such details might include things like a University of Florida sweatshirt or pleasant demeanor. These notes are written for doctors, albeit in service of patients.
Medical note taking developed as sort of art, in which doctors would record personal observations about patient encounters to consolidate their reasoning and honest recollections (which can and should include honest recollections about difficult or intransigent patients). The Obama-era 21st Century Cares Act changed that; in April 2021, the mandate “that patients be granted access to all of the information in their medical records, electronically and without charge or delay, and through patient portals or, to the extent possible, through third-party smartphone applications (apps)” went into effect.
In short, by joining the chorus of TikTok influencers mocking medical notes, Grubbs and Toler are not only missing an essential element of what medical note taking is meant to be, but they are contributing to a demoralizing trend. Doctors today are often pushed to maintain a state of hyper vigilance that is unrelated to patient care or wellbeing. On the contrary, an increasing variety of pressures actually distracts doctors from patient wellbeing—including the possibility of being mocked on TikTok for awkward-sounding notes about patient encounters.
This brings me to a note about Side Effects: I started this newsletter to help illustrate how certain top-down policymaking has had consequential, poorly understood, and harmful consequences for medical care in general, and the profession of medicine in particular. I look forward to continuing to do so in 2025, with a short biweekly Friday column alongside longer-form projects that I will share here periodically. Please consider subscribing! Would love to have you along.