Which Patients With Cancer Access Their Clinical Notes? A Disparities Analysis

Access to clinical notes enhances patient engagement and trust, and the 21st Century Cures Act enabled immediate electronic patient access in April 2021. Yet, technological advances may perpetuate disparities, which remain understudied. Understanding whether inequities in note access exist in oncology would highlight challenges around making this foundational health information available to all patients receiving ongoing, complex medical care.

This study at a high-volume specialty cancer center explored disparities around clinical notes posted to patients' portal accounts from September 1, 2021, to August 31, 2022, and accessed by March 19, 2024. Logistic and Poisson regression were used to identify patient characteristics associated with note access and note opening rates.

The study included 124,554 patients and 815,104 clinical notes, 43.7% of which (356,290) were accessed. Although modest differences in access rates emerged around sex, age, and marital status, larger disparities appeared for ethnicity, race, and language: Black patients (odds ratio [OR], 0.63 [95% CI, 0.60 to 0.66]; P < .001; incidence rate ratio [IRR], 0.74 [95% CI, 0.73 to 0.76]; P < .001), Hispanic patients (OR, 0.85 [95% CI, 0.80 to 0.90]; P < .001; IRR, 0.90 [95% CI, 0.89 to 0.92]; P < .001), and non-English-preferred language speakers (OR, 0.78 [95% CI, 0.72 to 0.84]; P < .001; IRR, 0.82 [95% CI, 0.80 to 0.84]; P < .001) were, respectively, 37%, 15%, and 22% less likely to open at least one note, and opened 26%, 10%, and 18% percent fewer notes, compared with white, non-Hispanic, and English-preferred patients, respectively.

This analysis highlighted disparities, by race, ethnicity, and language, in cancer patients' accessing clinical notes. Tailored interventions are crucial to ensure that diverse groups benefit from digital health care resources.