Privacy and Patient Involvement in e-Health Worldwide: An International Analysis

Nearly every nation is actively working on an e-Health policy or already has one. Personal Health Records (PHR) are considered as one of the key elements in the digitisation of the health sector. While nearly every e-Health agenda mentions privacy and data protection, the real world implementation can differ. A recent example is the planned launch of the German ""Elektronische Patientenakte"" (ePA), which has only limited data control features for the patient in its first version. This paper gives an overview of how the e-Health policies of the G7nations handle patient involvement and privacy for their PHR projects. With this analysis we show that privacy and patient involvement are crucial for the acceptance of such projects. Finally we propose a data sovereignty framework with guidelines for PHRs to give a user control over his data and establish trust in such systems through broad access, fine granular control, informed decision making, intuitive user experience and comprehensible transparency.