Adverse Characterizations of Sickle Cell Disease Patients in Electronic Health Records - Report - MDSpire

Adverse Characterizations of Sickle Cell Disease Patients in Electronic Health Records

  • By

  • Austin Wesevich

  • Alexandria Vangelatos

  • Michael Sun

  • Elizabeth L. Tung

  • Monica E. Peek

  • April 13, 2026

  • 0 min

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Clinical Report: Adverse Characterizations of Sickle Cell Disease Patients in EHRs

Overview

This study examined clinician bias in electronic health records (EHRs) by analyzing the use of negative descriptors in notes about patients with sickle cell disease (SCD) compared to patients with intersecting stigmatizing identities. Findings indicate that patients with SCD are disproportionately described with negative language, reflecting compounded biases related to race, chronic pain, and opioid use disorder (OUD).

Background

Patients with sickle cell disease, predominantly Black and affected by chronic pain, face multiple intersecting stigmatizing identities that contribute to clinician biases. These biases can influence clinical decision-making and worsen health outcomes, particularly in pain management. Prior research has documented disparities in opioid prescribing and discrimination in healthcare for Black patients and those with chronic pain or OUD. However, the relative impact of these factors on clinician attitudes toward patients with SCD remains underexplored.

Data Highlights

The study analyzed clinician notes from January 2019 to October 2020 for patients seen at the University of Chicago, categorizing patients into five groups: SCD, Black race without SCD, chronic pain without SCD, OUD without SCD, and a counterfactual group (non-Black without chronic pain or OUD). Seven negative descriptors (aggressive, agitated, angry, nonadherent, noncompliant, noncooperative, refuse) were assessed using natural language processing and machine learning. Covariates included age, sex, race, marital status, insurance type, comorbidity index, and clinical setting.

Key Findings

  • Patients with SCD were more frequently described with negative descriptors in clinician notes compared to Black patients without SCD, patients with chronic pain, patients with OUD, and non-Black patients without these conditions.
  • Negative descriptors such as 'aggressive,' 'angry,' and 'noncompliant' were disproportionately used in notes about patients with SCD.
  • The intersection of race, chronic pain, and opioid use contributed to compounded biases, with SCD patients experiencing the highest rates of negative characterizations.
  • Clinical notes from inpatient or emergency settings showed higher frequencies of negative descriptors compared to outpatient notes.
  • These findings persisted after adjusting for demographic and clinical covariates, indicating robust associations between SCD status and negative clinician language.

Clinical Implications

Clinicians should be aware of implicit biases that may influence documentation and treatment decisions for patients with SCD, particularly regarding pain management. Addressing negative characterizations in EHRs is critical to improving patient-provider relationships and ensuring equitable care. Training and interventions targeting bias reduction may help mitigate these disparities.

Conclusion

This study highlights the pervasive use of negative descriptors in clinician notes about patients with sickle cell disease, reflecting intersecting biases related to race, chronic pain, and opioid use. Recognizing and addressing these biases is essential to improving health outcomes for this vulnerable population.

References

  1. Clinician Bias and Health Outcomes References 1-10
  2. Studies Documenting Clinician Bias in SCD 11-18
  3. Discrimination in Healthcare Among Black Patients 9,19-27
  4. Bias Related to Chronic Pain and Opioid Use 28-47
  5. Methodology and Data Source 53-55

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