Journal of Medical Ethics 46 (6):386-391 (2020)

Abstract
A learning health system seeks to establish a closer connection between clinical care and research and establishes new responsibilities for healthcare providers as well as patients. A new set of technological approaches in medication adherence monitoring can potentially yield valuable data within an LHS, and raises the question of the scope and limitations of patients’ responsibilities to use them. We argue here that, in principle, it is plausible to suggest that patients have a prima facie obligation to use novel adherence monitors. However, the strength of the obligations depends considerably on the extent to which data that adherence monitors generate are, in fact, used to further the goals of LHSs. The way in which data ownership is structured in the USA poses a considerable challenge here, while the European Union framework offers a more promising alternative.
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DOI 10.1136/medethics-2019-105667
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How Should We Think About Clinical Data Ownership?Angela Ballantyne - 2020 - Journal of Medical Ethics 46 (5):289-294.

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