When Your Chart Labels You: Stigmatizing Language in Medical Records
How doctors write about you can hurt more than your feelings
In a 1996 Seinfeld episode, Elaine picks up her paper chart and sees that a nursing note referred to as “difficult” after she refused to put on a flimsy gown. She wasn’t being “difficult” - the gown seemed unnecessary for her exam. After questioning the physician, he lies to her and says he’s erased it, despite it being written in pen.
Elaine tries to get a new doctor who doesn’t think she’s difficult, but realizes that her chart has followed her to the next physician. It becomes clear she will never escape this label.
It’s in her permanent record.
Elaine is not alone.
Physicians’ use of stigmatizing language is a known and long-standing problem. Anti-fatness and bias against people with substance use disorders are rampant in medical records. A Reddit thread for people with a bipolar diagnosis is full of rants about the language used to describe them in their charts.
To better understand this issue, it’s helpful to know a little about the evolution of medical records and who can see what doctors write.
History of the Electronic Medical Record
The first electronic medical records (EMR) emerged in the 1960s with the Mayo Clinic in Rochester, Minnesota aiming to move away from the giant amounts of paper needed for medical records. The birth of EMRs of today came out of the Regenstrief Institute in Indianapolis in 1972. However, the physical space and cost of computing in these early years were so high that adoption remained low. In 1991, the Institute of Medicine recommended that all physician offices switch to computerized records by 2000.
My first job at Cedars-Sinai Medical Center in the early 2000s had me navigating a combination of electronic records (the hospital was determined to make their own system) and giant binders of patient information. I remember one physician’s “notes” were little more than squiggly lines.
Eventually, cloud-based EMR systems emerged, significantly reducing costs. By the time I entered medical school in 2006, out-of-the-box cloud-based EMRs like Epic and Cerner were gaining traction. The Veterans Administration Hospitals used a homegrown system - Computerized Provider Record System (CPRS), the EHR component of VistA (Veterans Health Information Systems and Technology Architecture). In 2009, the passage of the American Recovery and Reinvestment Act (ARRA) incentivized EMR adoption through the Meaningful Use program.
The adoption of these electronic records - making it easier for colleagues and lawyers to review medical records - drove changes in the stigmatizing language used, but didn’t eliminate it.
Even with widespread adoption of electronic medical records, patients didn’t have easy access to their information. While online patient-facing portals would reveal lab values, radiology reports, and after-visit summaries, these were not available in real time. A doctor or nurse had to choose to release that information to patients - usually after it had been discussed in person or over the phone. As a patient, it was unlikely to ever see medical notes unless you snuck a peek like Elaine, or you went through the arduous process of making a formal request from the hospital or clinic’s medical records office. There were fees for getting copies of these records.
Open Notes Movement
In 2012, an exploratory study had 105 primary care doctors invite 20,000 of their patients to read their notes via secure online portals. The study found that patients loved having access. While some patients had increased worries and felt confused by the notes, most participants experienced no negative impacts and felt more empowered. Doctors noted that access for patients did not increase their workload.
The Open Notes movement was born out of this study, driving research and policy to increase access to medical records. The passage of the 21st Century Cures Act in 2016 put a timeline in place for hospital systems to implement free, easy access data sharing with patients.
As of April 5, 2021, all U.S. healthcare systems are required to electronically share clinicians’ visit notes and other health data with patients at no charge.
While the movement had been growing, the implementation of shared notes surprised and worried many clinicians. Various specialists thought they were exceptional and that their notes shouldn’t be released. Some specialists felt their notes were exceptionally more difficult to understand or more technical than other specialties. Many anesthesiologists expressed concern that our records would be too challenging for patients to understand, and worried about the timing of records release relevant to delivering an anesthetic. My friends and I wrote an article for our peers addressing these concerns and how to move past them.
Physician Anxiety and the Need for Self-reflection on Language
Many physicians had (and still have) anxiety about open notes.
While lots of physicians cited technical knowledge gaps between doctors and patients, I think that much of the concern stemmed from an underlying fear of being criticized for the ways that we write about patients.
Patients can now read exactly what we write, meaning that physicians have needed to do a great deal more self-reflection on why we write what we write and how it may be received by the various people and entities who access the note. The medical record was never designed for patients to read. Notes are used to communicate with other healthcare providers, to code for insurance billing, track quality metrics, and now also reviewed by patients.
Even when we write things in a technically medically correct way, we have rating scales and mnemonics that may sound shocking, crass, or unkind to those not indoctrinated into medical culture. While the phrase “difficult patient” has fallen out of favor, I’ve seen alternative euphemistic judgments creep into the record with the same flavor. To be labeled as “non-compliant” or “non-adherent” can completely flatten the system-level factors that make it hard to follow certain medical advice.
Our Health Data Isn’t Secure Enough
Even for physicians who document with care and center patient dignity, legal gaps in the privacy of medical records pose increasing risks in today’s political environment. HIPAA, the U.S.’s health information privacy law, allows for certain data to be disclosed to law enforcement. With so many states using medical practice as a lever to prevent patient access to healthcare, the medical record can lead to serious consequences for patients and physicians. From abortion to gender-affirming care to immigration status, the medical record can be used to cause harm.
Abortion Patient Data
Anti-abortion activist Judge Matthew Kacsmaryk struck down Biden-era enhanced privacy protections for abortion patients, which shielded patients’ abortion records. I’ve written before about how healthcare workers are a major source of reports to law enforcement of self-managed abortions. In August, the Tennessee attorney general subpoenaed abortion records from four area hospitals in a lawsuit about the state’s near-total abortion ban.
Gender Affirming Care Patient Data
Multiple arms of the government have come to attack access to gender-affirming care. Dr. Oz sent a threatening letter to hospitals, putting them on notice that any attempt to bill Medicare for care related to gender-affirming care would be scrutinized. This is paired with the FBI launching a hotline to report physicians who aim to provide any gender-affirming care to patients.
The federal government is attempting to subpoena transgender children’s records from at least 20 major children’s hospitals. The subpoenas demand access to medical records, hospital and clinic documents, and text messages related to gender–affirming care. You can read the subpoena Children’s Hospital of Philadelphia received here. Thankfully, U.S. District Judge Myong Joun blocked the attempt on Boston Children’s Hospital on September 10.
Immigrant Patient Data
The recent escalation of immigration raids has increased the risks of undocumented patients. Clinicians must be extremely careful in navigating the needs of patients in the face of increasing attempts at medical record surveillance.
Dr. Mara Gordon and I will discuss these issues and more this Friday!
This Friday, I’ll chat with Your Doctor Friend,
, about how the medical record can lead to patient harm - and what we can do about it.I hope to see you there live on Oct 3, 2025 at 10am PT/1pm ET.
