Study Examines Bias in Electronic Health Records for Sickle Cell Disease Patients: A Closer Look at Language and Stigma

Unpacking Stigma: The Challenge of Negative Language in Sickle Cell Disease Documentation

In a significant cross-sectional analysis published in JAMA Network Open, researchers led by Dr. Austin Wesevich examined a critical aspect of healthcare documentation: the use of negative language in electronic health records (EHR) concerning patients with sickle cell disease (SCD). The findings shed light on the interplay of race, pain, and opioid-related stigma, raising important questions that require our attention.

The Study: A Data-Driven Approach

The dataset utilized in this analysis was extensive, comprising 39,871 clinician notes from 18,326 patients at the University of Chicago hospital. Spanning over a year—from January 1, 2019, to October 1, 2020—the study employed natural language processing and machine learning techniques to identify negative descriptors in clinician notes. Researchers focused on seven particularly harmful terms: aggressive, agitated, angry, nonadherent, noncompliant, noncooperative, and refuse.

Patients with SCD were compared with four other groups: Black patients without SCD, those with chronic pain, individuals with opioid use disorder (OUD), and a control group of non-Black patients without either chronic pain or OUD.

Key Findings: The Reality of Negative Language

Dr. Wesevich and his team found that negative descriptors emerged in 15% of clinician notes for patients with SCD—much higher than the 14% for patients with OUD, 7% for Black patients without SCD, and just 3% for the counterfactual group. Notably, those who identified with all three stigmatizing factors (race, chronic pain, and opioid exposure) had the highest prevalence of negative language, with 19% of notes reflecting this bias.

The study highlights a troubling trend: the increased prevalence of negative descriptors in notes suggests a cycle where biased documentation may perpetuate discriminatory treatment in ongoing patient care.

The Complex Nature of Bias

An essential question raised is whether the negative language surrounding SCD is primarily influenced by race, chronic pain, or the societal stigma associated with opioid use. Dr. Wesevich’s analysis finds that even after adjusting for factors such as age, sex, marital status, insurance, and comorbidities, patients with SCD still faced significantly higher odds of being described negatively compared to their counterparts.

The adjusted odds ratios (aORs) illustrated that:

• The odds of negative descriptors for SCD patients were 2.46 times higher than Black patients without SCD.
• The odds were 1.96 times greater compared to patients with chronic pain, and a staggering 14.26 times compared to the control group.

Such statistics compel us to reconsider how we view and document care for SCD patients, revealing ingrained biases that extend beyond mere words.

Clinical Implications: More Than Just Words

The repercussions of negative language in EHRs can be profound. Patients with SCD often visit healthcare settings during acute vaso-occlusive crises that necessitate quick judgment calls concerning pain management and trust. This study highlights a concerning reality: the EHR might become a carrying vessel for stigma, influencing how future encounters are approached.

Dr. Wesevich noted, “Our findings suggest that patients with sickle cell disease likely experience both race-based and disease-related biases. The stigma associated with opioids likely affects sickle cell care.” These biases can hinder robust doctor-patient relationships, impacting the quality of care.

Moving Forward: A Call to Action

Addressing the stigma present in clinical documentation is crucial for improving care for patients with SCD and other marginalized groups. It necessitates a concerted effort among healthcare professionals to consciously reflect on their language, training focused on recognizing and addressing biases, and systems that encourage accurate and empathetic documentation.

Conclusively, as healthcare providers, it is our responsibility to foster an equitable environment, ensuring that our language does not reflect or perpetuate biases. By acknowledging the findings of this pivotal study, we can pave the way for more respectful and effective care that recognizes the complexity of each patient’s experience.