Frontiers of Health Policy: Digital Data and Personalized Medicine

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This paper argues that due to two unstoppable mechanisms, some of the most pressing future questions in health policy will relate to the use of digital technologies to analyze data concerning patient health. The first mechanism is the shift away from a system where patient data was essentially temporary and not intended to be reused or easily accessed again, to a new digital world where patient data is easily transferred and accessed repeatedly. The second mechanism is a fundamental deepening of the nature of patient data that enables increased personalization of healthcare for each individual patient, based on not only their detailed medical history but also their likely future medical history that can be projected for their genetic makeup. We summarize our research investigating the potential consequences of policies in this new world where patient data is virtually costless to store, share and individualize. We emphasize that issues of data management and privacy are now at the forefront of health policy considerations.