Patient Perceptions About Data Sharing & Privacy: Insights from ActionADE.

Information communication technologies (ICTs) may improve health delivery by enhancing informational continuity of care and enabling secondary use of health data including public health surveillance and research. ICTs also introduce concerns related to privacy. In this paper, we examine and address this tension in the context of the development and implementation of a novel platform that will enable the documentation and communication of patient-specific ADE information, titled ActionADE. We explored privacy concerns qualitatively from the perspective of patients. Our findings will inform a series of recommendations for system design that seek to balance the need to both share and protect personal health information.