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

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International Journal of Environmental Research and Public Health
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PubMed
Summary

Patients with substance use disorder (SUD) are more willing to share health data when they trust providers and feel satisfied with care. Addressing stigma is crucial for equitable SUD data sharing and improved health outcomes.

Keywords:
data sharinghealth equitystigmasubstance use disorderwillingness to share

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Area of Science:

  • Public Health
  • Health Informatics
  • Social Science

Background:

  • Sharing substance use disorder (SUD) data is vital for equitable healthcare and improved outcomes, especially for marginalized groups.
  • Privacy concerns, stigma, and regulatory compliance often impede effective SUD data sharing.
  • This study investigates patient preferences and influencing factors in sharing SUD medical records, focusing on sociocultural and systemic elements.

Purpose of the Study:

  • To explore patient willingness to share SUD data.
  • To identify key factors influencing data sharing decisions, including stigma, trust, and care satisfaction.
  • To understand patient preferences for data sharing across different scenarios.

Main Methods:

  • A cross-sectional electronic survey was administered to 357 adult patients at four Arizona community clinics.
  • The survey assessed sociodemographics, stigma experiences, healthcare provider trust, care satisfaction, and willingness to share SUD data.
  • Descriptive statistics, Pearson correlations, and one-way ANOVA were used for data analysis.

Main Results:

  • SUD history, diagnoses, and treatment details were identified as highly sensitive information.
  • Increased stigma correlated with higher data sensitivity and reduced willingness to share, particularly with external providers (p < 0.001).
  • Trust in providers and higher care satisfaction were associated with greater willingness to share data (p < 0.01), with a preference for sharing during emergencies or for direct treatment over administrative or research purposes (p < 0.001).

Conclusions:

  • Addressing stigma and fostering trust are essential for equitable SUD data sharing.
  • Policies should prioritize patient control over sensitive health information and ensure culturally competent care.
  • Enhancing patient confidence in data usage can promote health information exchange and improve SUD care.