Patients’ and families’ perceptions of privacy of health information and data sharing in New Brunswick

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Date

2024-12

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Journal ISSN

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Publisher

University of New Brunswick

Abstract

Information sharing between different interoperable health databases is called health information exchange (HIE). Although the HIE of personal health information (PHI) can improve patient safety for Canadians, some provinces do not disclose PHI about patient safety incidents with federal and pan-Canadian patient safety surveillance systems. A frequently cited barrier to HIE by healthcare organizations is patients’ and families’ concerns for their privacy. This study, guided by qualitative descriptive design, explored patients’ and families’ perceptions of privacy and the secondary use of PHI collected, used, disclosed, and retained on patient safety events. Participants identified privacy criteria, conditions for the access of PHI, types of data for HIE, and the purpose of HIE. There is a significant opportunity for data custodians to use the research findings to create a patient-centric framework for the HIE of PHI.

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Keywords

MEDICINE::Social medicine::Public health medicine research areas::Public health science, INTERDISCIPLINARY RESEARCH AREAS::Health and medical services in society, SOCIAL SCIENCES::Statistics, computer and systems science::Informatics, computer and systems science::Databases

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