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Chapter 9 - Patient Data, Ownership, Storage, and Social Media

from Part I - General Ethics

Published online by Cambridge University Press:  29 May 2020

Stephen Honeybul
Affiliation:
Sir Charles Gairdner Hospital, Royal Perth and Fiona Stanley Hospitals
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Summary

The amount of data associated with healthcare has risen steeply recently due to the advent of new diagnostic and imaging tests and the computerization of medical records. At the same time, other data associated with patients separate from their experience in the healthcare system has also grown exponentially due to the popularization of cell phones and other digital devices and social media. Increasingly, this data – historically separate from the healthcare system – is being proposed for use in health services research and patient care. In this chapter, we highlight the ethical issues presented by this massive expansion of patient data and discuss ethical issues that researchers and clinicians must respect in the collection, ownership, and storage of patient data from these new sources, through the discussion of two illustrative cases in neurosurgical research and patient care.

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Publisher: Cambridge University Press
Print publication year: 2020

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