A new study published in JAMA Network Open and led by Wesevich and colleagues at UChicago Medicine highlights the intersectional biases that may affect the quality of care for patients with sickle cell disease, most of whom are Black. The research, announced on Apr. 13, examined associations between negative descriptors in clinician notes and overlapping stigmatized factors such as race, chronic pain, and opioid treatment.
The topic is significant because it sheds light on how multiple social identities—such as race, illness status, and medication use—can combine to influence patient experiences in healthcare settings. These overlapping factors can make it difficult to determine which identity triggers discrimination.
The researchers used natural language processing and machine learning to analyze over 18,000 adult patient records containing nearly 40,000 clinician notes. They found that patients with sickle cell disease had higher odds of having negative descriptors in their health records compared to Black patients without sickle cell disease or those with chronic pain. However, these odds were similar to those for patients diagnosed with opioid use disorder. This suggests that bias toward people with sickle cell disease may be strongly tied to stigma around opioid use rather than solely race or chronic illness.
Senior author Monica Peek said: "Part of the issue for Black patients - and many marginalized groups - is that many in this population have multiple social identities that may be stigmatized because of income, immigration status, gender, or other factors. So when patients experience discrimination in healthcare, it is challenging to pinpoint what identity may be triggering the behavior." Peek added: "With this paper, our goal was to try and isolate the effect of race, chronic illness, and opioid use in order to understand how clinicians respond to each one and what that means for the care they deliver to patients with sickle cell disease." She also pointed out: "Although patients with sickle cell disease routinely use opioid medications to manage their chronic pain, the vast majority do not have an opioid use disorder... there is a persistent bias that stereotypes these patients primarily as 'drug-seekers' rather than regular people managing a chronic disease."
Wesevich explained some challenges faced by clinicians: "Clinicians cannot measure pain directly without asking the patient... there must be some level of trust... Even if they behave very differently from someone experiencing appendicitis or childbirth... a patient with sickle cell disease who experiences daily pain and who happens to be Black and asking for opioid treatment deserves no less trust than any other patient."
As part of efforts toward change, Wesevich’s team developed an anti-bias curriculum using roleplay scenarios aimed at reducing bias related specifically to sickle cell care. Nearly 70 UChicago Medicine residents participated during the current academic year; early signs suggest positive effects from this intervention.
"This work sheds light on issues patients have been experiencing for many years," Wesevich said. "We need effective anti-bias interventions to improve care for patients with sickle cell disease... this deeper understanding is a step in the right direction." The project has received funding from both the ABIM Foundation and a Bucksbaum-Siegler Institute pilot grant.
