Navigating Privacy in Health Data Sharing: A Patient-Centric Approach to Health Information Exchange

Personal Health Information (PHI) sharing through Health Information Exchange (HIE) enhances patient safety in Canada, yet not all provinces and territories voluntarily disclose PHI on safety incidents to federal and pan-Canadian surveillance systems. A frequently cited barrier by healthcare organizations for HIE between different interoperable health databases is patients' and families' concerns for their privacy. This explorative qualitative study examined patients' and families' attitudes toward PHI sharing, including its secondary use in patient safety events. Rather than expressing reluctance, participants described support for HIE when privacy safeguards, such as defined sharing purposes and anonymous formats, were in place. These findings present a significant opportunity for health leaders and data custodians to use the research findings to create a patient-centric framework for the HIE of PHI.