AI Reveals Negative Labels in Medical Records for Sickle Cell Patients

Key TakeawaysSickle cell patients are often labeled as angry or noncompliant in their medical chartsStigma surrounding opioid use is a primary driver of clinician biasResearch shows that negative medical notes can reduce a doctor's empathy and lead to less accurate medical care.WEDNESDAY, April 15, 2026 (HealthDay News) —For many patients with sickle cell disease, a trip to the emergency room has an unwanted side-effect: In their search for relief from agonizing pain, they are often dismissed as drug-seekers. A new study from the University of Chicago Medicine suggests that clinician bias, fueled largely by the stigma of opioid use, is causing these patients — most of whom are Black folks — to be treated differently than others. “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,” senior author Dr. Monica Peek said in a news release. She's a primary care physician and professor for health justice at UChicago Medicine.Sickle cell disease is a genetic blood disorder that causes red blood cells to become hard and crescent-shaped. These cells can get stuck in small blood vessels, blocking blood flow and causing pain crises often described as feeling like shards of glass moving through the veins.Because opioids are the primary treatment for this level of pain, sickle cell patients are often unfairly stereotyped as drug-seekers, researchers said.Researchers used artificial intelligence and natural language processing to scan nearly 40,000 clinician notes for 18,326 adult patients seen at UChicago. They looked for seven "negative" descriptors: Aggressive, agitated, angry, nonadherent, noncompliant, noncooperative and refuse.The findings were published April 13 in JAMA Network Open. The study found that sickle cell patients had more than twice the odds of having negative words in their records compared to Black patients without the disease. Further, sickle cell patients had roughly the same odds of being negatively described as patients diagnosed with opioid use disorder.Sickle cell patients were more likely to be described as "angry," "nonadherent," "noncompliant" or refusing than patients in at least one of the other study groups.Negative descriptors were present in 15% of notes for sickle cell patients; 14% of notes for patients with opioid use disorder; 7% of notes for Black patients; and 7% of notes for patients with chronic pain but not sickle cell. Notes for Black patients with sickle cell, chronic pain and opioid disorder had the highest frequency of negative descriptors, 19%. “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," Peek said. "So when patients experience discrimination in health care, it is challenging to pinpoint what identity may be triggering the behavior," she added.When a doctor writes a negative note in a patient's electronic health record, it acts like a warning sign for the next clinician who reads it, researchers said. Previous research has shown that these biased descriptions lead to doctors having less empathy for the patient and even misremembering important medical details. An episode of the HBO Max drama "The Pitt" portrayed the plight of sickle cell patients. In the episode, a Black woman arriving at the E.R. in acute pain is initially dismissed as drug-seeking.“Unfortunately, this contemporary media portrayal is all too relevant,” said lead author Dr. Austin Wesevich, a hematology and oncology specialist at UChicago Medicine. “Nationwide, patients with sickle cell disease are not receiving the same quality of care that other patients experience.”To combat this, UChicago Medicine has launched an anti-bias curriculum. The program uses roleplay and data to show doctors how their words can physically harm a patient’s chances of recovery. The goal is to move doctors away from trying to measure pain through objective measures like heart rate and toward a system of trust."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," Wesevich said.So far, the new curriculum has been delivered to 70 UChicago Medicine residents.More informationThe U.S. Centers for Disease Control and Prevention has more details on managing the symptoms and challenges of Sickle Cell Disease.SOURCES: University of Chicago Medical Center, news release, April 13, 2026; JAMA Network Open, April 13, 2026 .What This Means For YouYou have the right to examine your medical notes to ensure they accurately reflect your health journey. Your health care provider may have them posted on their patient portal..Sign up for our weekly HealthDay newsletter

AI Reveals Negative Labels in Medical Records for Sickle Cell Patients

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