Jennifer Wineke
Philadelphia, Pennsylvania, United States

Modern-day doctors share a common dilemma: how do you get all of the necessary information into the electronic medical record while still being present with the patient? Every doctor I have talked to approaches this challenge a little differently. Some acknowledge the impersonality upfront and apologize to the patient (“I have to type while you talk, but I’m still listening”) or try to compensate with lots of eye contact between staring at the screen. A medical school classmate of mine recently described an encounter with a doctor who had arrived at an interesting compromise—he read everything he typed into my friend’s chart aloud.

After the doctor asked my friend if he used any drugs and my friend said that he did not, the doctor dictated as he typed: “Patient denies drug use.”

Denies? As a medical student, my friend felt that he should have been used to that kind of medicalized language, but it was odd to be on the receiving end. The hint of mistrust implicit in the word stung a bit.

Another classmate relayed the story of her aunt’s doctor who transcribed his notes via a headpiece real-time during the visit. During the physical exam, the doctor continuously reported his findings into the microphone connected to his headpiece (“lungs clear to auscultation bilaterally . . .”), making her aunt feel a little like the conversational third wheel.

These stories highlight a recent trend in medicine—doctors sharing their notes with their patients—alongside a theme that has much older historic origins: patient discomfort with medical language. As we move toward more transparency in medicine and more patients start to access—or even co-create—their doctors’ visit notes, the language used to describe patients must necessarily change as well.

The movement for open notes

The OpenNotes movement started in 2010, when three medical centers in Boston, rural Pennsylvania, and Seattle experimented with inviting patients to read their doctors’ notes via online portals.¹ 105 primary care doctors invited over 20,000 patients to read their visit notes over the course of a one-year period and complete surveys about their experience.

The results were overwhelmingly positive: of the 5,219 patients who opened at least one note and completed a survey, 77% to 87% of patients across the three medical centers felt more in control of their care and 60% to 78% of patients taking medications reported increased adherence to their medication regimen. When asked whether they wanted open notes to continue, 99% of patients responded in the affirmative. They reported that the notes helped them better understand their medical issues, recall their treatment plans, and feel better prepared for future visits.

Since the results of that study came out in 2012, over 100 major health systems in the U.S. and Canada have adopted open notes, including the U.S. Department of Veteran’s Affairs.² The practice is even expanding into the mental health realm, with psychiatrists and therapists starting to share their session notes with patients—a trend that has been met with some controversy.³

Leaders of the OpenNotes movement have recently taken record transparency a step further with OurNotes, a platform that will allow for co-creation of visit notes by both physician and patient, similar to Google Docs.⁴ Patients might be asked to review previous notes, make changes or additions, or add their goals for the next doctor’s visit.⁵ OurNotes is being piloted at several medical centers across the country in 2018, and researchers plan to use the results to inform a larger study in the future.

A brief history of the doctor’s note

The movement in the US to share doctors’ notes is only the latest development in a historical trajectory toward transparency in medical records. Before the Health Insurance Portability and Accountability Act (HIPPA) in 1996, patients did not have the right to review their medical record; in fact, patients had to obtain a subpoena to review their own record.⁶ While the rise of electronic medical records and online patient portals in the 1990s allowed patients to access information like medication lists and test results, doctors’ visit notes have traditionally been kept from patients.

For most of history, the doctor’s note was not a standardized document. A physician might keep personal notebooks or diaries, but there were no professional guidelines or requirements for record keeping. Some of the most extensive surviving medical records in the Western tradition were kept by astrologers, like Simon Forman and Richard Napier in the late sixteenth century, who recorded over 10,000 consultations—most related to health—with astrological charts and symbols along with treatment plans.⁷ Theodore de Mayerne, a Huguenot physician in the seventeenth century, kept another famously detailed casebook with lengthy narratives about each patient and drawings in the margins.

A systematic method for documenting patient visits was not developed until the advent of computers in the 1960s. Dr. Lawrence Weed is credited with inventing the problem-oriented medical record and the SOAP (subjective/objective/assessment/plan) note, a formalized approach to writing a visit note that is now ubiquitous.⁸

As the form of doctors’ notes has changed, so has their function. While doctors’ notes used to be purely within the purview of the doctors who wrote them, they now serve to inform other members of the clinical team as well as billing administrators, quality monitors, insurance companies, and lawyers. And now their audience includes the patient as well.

Discomfort with doctor-speak

In an episode of Seinfeld that aired in 1996 (just a just few months after HIPPA), Elaine peeks at her chart and discovers that she has been described as “difficult,” which leads her to enlist Kramer’s help in trying to steal her chart from the doctor’s office. “Difficult,” like “noncompliant,” is a label that physicians use among an audience of fellow clinicians. While not exactly medical slang (the most offensive of which—popularized by Samuel Shem’s infamous 1978 book House of God—is typically restricted to conversation), it is the kind of coded word that doctors typically do not want their patients to see.

Language use was one reason why many doctors who were approached or enlisted in the 2010 OpenNotes study were concerned about offending or worrying their patients.² Some feared the extra time burden involved in either explaining medical jargon to patients or writing their notes in a way that would not be misconstrued, and there was concern that abbreviations would be confusing or inadvertently offensive (like S.O.B. for short of breath, for example). They were also concerned that the “watering down” of medical language with the patient in mind would impede efficient communication between medical personnel.⁹ “Other experts are not expected to share their work tools with clients,” wrote one psychiatrist. “Collaboration is better achieved by simple doctor-patient discussion, and patient education by easily read handouts. Quality medical care is too important to sacrifice to feel-good initiatives.”¹⁰

In practice, a “substantial minority” of doctors who participated in the study reported changing the language used in their notes when they knew patients could have access to them.¹ For example, some doctors reported using the phrase “body mass index” in place of “obesity,” fearing the latter could be interpreted as derogatory. Some physicians also reported changing the way they used the note, like “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.”

According to the survey data, concerns about offending or worrying patients did not materialize as much as doctors had feared; only 1% to 8% of patients reported that the notes “caused confusion, worry, or offense.” At the conclusion of the study, all participating doctors wanted to continue sharing their notes, reporting improved communication, education, and stronger relationships with their patients.

While the 2010 study allayed some fears about doctors’ language offending patients, a greater concern may be ensuring that their language is understood. A recent study involving patients at safety-net clinics showed that many patients felt their notes had too much medical jargon (29%) or were too long (26%), and patients relied on their provider to explain confusing terms.¹¹ One participant summed up their concerns: “I didn’t go to school to learn these words and I have no interest in learning these words. I want it dummied down . . . Write it out in layman’s terms if you’re going to hand me notes.”

And then there is the more subtle discomfort with doctor-speak articulated by my friend who “denied” his drug use; the language of medicine often calls the patient’s account into question. Weed’s SOAP framework as described above classifies information provided by the patient as subjective, and observations made by the physician or laboratory as objective. This framework is then encoded in the language used to convey that information; sociologists’ analysis of case reports document the long history of physicians “observing” or “noting” and patients “claiming,” “admitting,” or “denying.”¹² Treating the patient’s story as subjective perception might be acceptable within an audience of clinicians, but may not go over quite as well when the patient is in the audience, too.

As with any piece of writing, the intended reader should dictate the content and form. In the case of the doctor’s note, the recent introduction of the patient as reader is shaping both—and many doctors are not on board with the changes. But if the OpenNotes and OurNotes trends continue to grow, doctor-speak will have to inch closer to patient-speak. And when health and happiness is on the line, it is hard to argue with the idea that everyone should be speaking the same language.

References

1. Delbanco T, Walker J, Bell SK, Darer JD, Elmore JG, Farag N, et al. “Inviting Patients to Read Their Doctors’ Notes: A Quasi-experimental Study and a Look Ahead.” Ann Intern Med. 2012;157:461–470.
2. Open Notes. https://www.opennotes.org.
3. Sun L H. “Should You Be Allowed to Go Online and Read What Your Shrink Thinks?” The Washington Post. WP Company, 18 May 2014.
4. Goldberg C. “How Are We Today? Study Lets Patients Help Write Medical Notes, Google Doc Style.” CommonHealth. 23 Jan. 2015. http://www.wbur.org/commonhealth/2015/01/23/our-open-notes-medical-records.
5. Mafi JN, Gerard M, Chimowitz H, Anselmo M, Delbanco T, Walker J. “Patients Contributing to Their Doctors’ Notes: Insights From Expert Interviews.” Ann Intern Med. 2018;168:302–305.
6. Ross SE, Lin C-T. The Effects of Promoting Patient Access to Medical Records: A Review. Journal of the American Medical Informatics Association : JAMIA. 2003;10(2):129-138.
7. Kassell L. Casebooks in Early Modern England:: Medicine, Astrology, and Written Records. Bulletin of the History of Medicine. 2014;88(4):595-625.
8. Weed LL “Medical records that guide and teach.” New Eng. J. Med. 278, 593-599, 652-657 (1968).
9. Walker J, Meltsner M, Delbanco T. US experience with doctors and patients sharing clinical notes BMJ 2015; 350 :g7785.
10. Chase M. 2016, October 13. “Should Patients Read Their Progress Notes?” http://protomag.com/articles/should-patients-read-their-progress-notes.
11. Belyeu BM, Klein JW, Reisch LM, et al. Patients perceptions of their doctors’ notes and after-visit summaries: A mixed methods study of patients at safety-net clinics. Health Expect. 2017;00:1–9.
12. Anspach R. (1989). “Notes on the Sociology of Medical Discourse: The Language of Case Presentation.” Journal of health and social behavior. 29. 357-75.