Clinician Note Bias in Sickle Cell Disease: How Documentation Impacts Care

Patients with sickle cell disease (SCD) have more negative descriptors than Black patients without SCD and those with chronic pain, according to a study published online April 13 in JAMA Network Open.

Austin Wesevich, M.D., M.P.H., from the University of Chicago in Illinois, and colleagues examined clinician notes from outpatient, emergency department, and inpatient encounters from Jan. 1, 2019, to Oct. 1, 2020, to assess intersecting stigmatizing identities of patients with SCD, identifying as Black, presenting with pain, and treated with opioids. Notes were also included for a counterfactual group of patients who were not Black and did not have SCD, chronic pain, or opioid use disorder (OUD).

A total of 39,871 clinician notes were analyzed for 18,326 patients. The researchers found that negative descriptors were present in 15 percent of 1,443 notes among patients with SCD and in 19 percent of 643 notes among those with all four stigmatizing identities. The odds of a negative descriptor in notes were higher for patients with SCD versus Black patients without SCD, patients with chronic pain without SCD, and patients in the counterfactual group (adjusted odds ratios, 2.46, 1.96, and 14.26, respectively), but no difference was seen compared with patients with OUD without SCD.

“This work sheds light on issues patients have been experiencing for many years, and we’re not only paying attention to it — we’re doing something about it,” Wesevich said in a statement. “We need effective anti-bias interventions to improve care for patients with sickle cell disease, and this deeper understanding is a step in the right direction.”

Why Documentation Language Matters in Clinical Care

EHRs are not just passive repositories of information — they actively shape how providers interpret patients, make decisions, and prioritize care.

The language used in notes can influence:

• Clinical judgment during handoffs
• Pain management decisions
• Perceptions of patient credibility and adherence
• The overall therapeutic relationship

Because notes persist across encounters, the framing of a patient in one visit can carry forward into future interactions — potentially compounding bias over time. 

Common Types of Negative Descriptors in Patient Notes

The study’s researchers identified several categories of language that appeared more frequently in notes for patients with SCD, including:

• Terms such as “aggressive,” “difficult,” or “uncooperative” may reflect provider frustration and introduce subjectivity into the patient record.
• Words like “noncompliant” or “refuses care” can often lack context and may obscure underlying barriers, such as prior negative healthcare experiences, limited access to medications, or worries about side effects.

Even the most subtle differences in phrasing can completely shift how providers interpret a patient’s behavior.

Sickle Cell Disease, Pain, and the Risk of Compounded Bias

Patients with SCD frequently experience recurrent, acute pain episodes alongside chronic pain, leading to repeated interactions with the healthcare system. Most of the time, these encoutiners involve opioid-based pain management, which can add another layer of scrutiny.

The study found that patients with SCD had similar rates of negative descriptions as patients with opioid use disorder — highlighting a possible overlap in stigma. For Black patients, who are disproportionately affected by SCD in the United States, this creates a “triple burden” of bias related to race, pain, and perceived medication use.

How Bias in Notes Can Influence Treatment Decisions

Documentation biases are not just a matter of language — they can have tangible clinical consequences.

Negative descriptions may contribute to:

• Undertreatment of pain
• Delays in emergency department care
• Increased skepticism toward patient-reported symptoms
• Strained patient-provider relationships

EHRs as a Vector for Bias Propagation

One of the most significant findings is how easily biased language can persist and spread within the EHR. When negative descriptors are embedded in the chart, they can shape expectations before a clinician even meets the patient. This chart bias can accumulate across encounters, reinforcing a cycle that can be difficult to interrupt.

Practical Strategies to Improve Clinical Documentation

Addressing bias in documentation doesn’t require a complete overhaul of clinical workflows. Small, intentional changes can make a meaningful difference and improve patient experiences within the healthcare system.

Here are some practical strategies clinicians can adopt:

• Use objective, descriptive language
• Add clinical context
• Document shared decision-making
• Avoid assumptive language

The Takeaway

The study shows that clinical documentation is not neutral. The words used in patients’ medical records can shape perceptions, influence decisions, and ultimately impact care.

For patients with SCD, thoughtful, objective, and context-rich documentation is more than good practice — it is an essential component of delivering equitable, patient-centered care.

Abstract/Full Text

Are you a healthcare professional? Register with us today!