Treading the Line: Seeking balance in information sharing and privacy in ActionADE

Patient data in health care offers both opportunities and challenges that benefit from study through a sociotechnical lens. This thesis examines issues related to data sharing and privacy in the context of the development and implementation of ActionADE, a system designed to enable the communication and documentation of adverse drug events (ADEs), which are the harmful and unintended consequences of medication use. This thesis first explores the current policy environment surrounding health data privacy in British Columbia as it relates to ActionADE, and then contributes patient perceptions and attitudes about data sharing and privacy in the context of ActionADE through an analysis of focus group data. This thesis results in a series of recommendations for ActionADE, in order to identify information sharing preferences, privacy concerns, and policy constraints at the outset, striking a balance between the need to both disclose and protect personal health information.