This pilot study compares medical record data sensitivity (e.g., depression is sensitive) and categorization perspective (e.g., depression categorized as mental health information) of patients with behavioral health conditions and healthcare providers using a mixed-methods approach employing patient's own EHR. Perspectives of 25 English- and Spanish-speaking patients were compared with providers. Data categorization comparisons resulted in 66.3% agreements, 14.5% partial agreements, and 19.3% disagreements. Sensitivity comparisons obtained 54.5% agreement, 11.9% partial agreement, and 33.6% disagreements. Patients and providers disagreed in classification of genetic data, mental health, drug abuse, and physical health information. Factors influencing patients' sensitivity determination were sensitive category comprehension, own experience, stigma towards category labels (e.g., drug abuse), and perception of information applicability (e.g., alcohol dependency). Knowledge of patients' sensitivity perceptions and reconciliation with providers could expedite the development of granular and personalized consent technology.
Keywords: data sharing; electronic health records; mixed-methods study; patient preferences; sensitive data.