Wei Mengyi, Todd Michael, Campbell Aimee N C, Chern Darwyn, Lott Eric, Whitfield Mary J, Stavros Nick, Greenberg Elise, Grando Adela
College of Health Solutions, Arizona State University, Phoenix, AZ 85004, USA.
Edson College of Nursing and Health Innovation, Arizona State University, Phoenix, AZ 85004, USA.
Int J Environ Res Public Health. 2025 Apr 15;22(4):617. doi: 10.3390/ijerph22040617.
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 ( < 0.001). In contrast, trust in providers and higher satisfaction with care were linked to greater willingness to share data with all providers ( < 0.01). Patients were more inclined to share SUD data during emergencies or for direct treatment purposes than for administrative or research applications ( < 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.
共享物质使用障碍（SUD）数据对于推进公平的医疗保健和改善边缘化人群的治疗结果至关重要。然而，对隐私、污名化以及遵守数据隐私法规的担忧常常阻碍有效的数据共享。本研究探讨了患者与共享SUD相关医疗记录有关的偏好和考量因素，重点关注塑造其共享意愿的社会文化和系统因素。
来自亚利桑那州四个社区诊所的357名成年患者参与了一项横断面电子调查。该调查评估了社会人口学因素、污名化经历（自我导向、预期和基于提供者的）、对医疗保健提供者的信任、对护理的满意度以及在各种情况下共享SUD数据的意愿。使用描述性统计、Pearson相关性分析和单因素方差分析对数据进行分析，以揭示关键关联。
患者将SUD病史、诊断和治疗信息视为特别敏感的信息。污名化与更高的敏感性和更低的数据共享意愿显著相关，尤其是与他们主要医疗机构以外的提供者共享时（<0.001）。相比之下，对提供者的信任和更高的护理满意度与更愿意与所有提供者共享数据相关（<0.01）。与用于行政或研究用途相比，患者在紧急情况下或直接用于治疗目的时更倾向于共享SUD数据（<0.001）。
这些发现强调了解决污名化和建立信任以促进公平的SUD数据共享的伦理必要性。政策必须赋予患者对敏感健康信息的控制权，同时确保在提供护理时具备文化能力和公平性。确保患者对其数据的使用方式感到放心，可能会鼓励他们更多地参与健康信息交换，最终支持更有效和个性化的SUD护理。
