Balancing Privacy, Trust, and Equity: Patient Perspectives on Substance Use Disorder Data Sharing

Sharing substance use disorder (SUD) data is essential for advancing equitable healthcare and improving outcomes for marginalized populations. However, concerns about privacy, stigma, and adherence to data privacy regulations often hinder effective data sharing. This study explores patient preferences and considerations related to sharing SUD-related medical records, with a focus on the sociocultural and systemic factors that shape their willingness to share.

A total of 357 adult patients from four community-based clinics in Arizona participated in a cross-sectional electronic survey. The survey assessed sociodemographic factors, experiences of stigma (self-directed, anticipated, and provider-based), trust in healthcare providers, satisfaction with care, and willingness to share SUD data across various scenarios. Data were analyzed using descriptive statistics, Pearson correlations, and one-way ANOVA to uncover key associations.

Patients identified SUD history, diagnoses, and treatment information as particularly sensitive. Stigma was significantly correlated with increased sensitivity and reduced willingness to share data, especially with providers outside their primary facility (p < 0.001). In contrast, trust in providers and higher satisfaction with care were linked to greater willingness to share data with all providers (p < 0.01). Patients were more inclined to share SUD data during emergencies or for direct treatment purposes than for administrative or research applications (p < 0.001).

These findings underscore the ethical imperative to address stigma and foster trust to promote equitable SUD data sharing. Policies must empower patients with control over sensitive health information while ensuring cultural competence and fairness in care delivery. Ensuring that patients feel confident in how their data are used may encourage greater participation in health information exchange, ultimately supporting more effective and individualized SUD care.