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Personalized MedicineEmpowered Patients in the 21st Century?$
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Barbara Prainsack

Print publication date: 2017

Print ISBN-13: 9781479814879

Published to NYU Press Scholarship Online: September 2018

DOI: 10.18574/nyu/9781479814879.001.0001

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The Patient Researcher

The Patient Researcher

Chapter:
(p.15) 2 The Patient Researcher
Source:
Personalized Medicine
Author(s):

Barbara Prainsack

Publisher:
NYU Press
DOI:10.18574/nyu/9781479814879.003.0002

Policy makers and practitioners alike emphasize that the realization of personalized medicine requires “activated patients,” and some go as far as saying that the survival of our health care systems will depend on it. This chapter shows that in the era of digital health, “activated patients” are not merely expected to obtain information on their health and manage their own health risks but are also supposed to contribute data and information. This expectation is built into the very infrastructures of digital health and medicine, which turns patients into contributors to the personalization of their own health care, and to research, by default. Do those patients who cannot or will not participate miss out on the benefit of personalization, or can it be a blessing to be below the digital health radar? And what new practices and patterns of exclusion emerge in the context of these developments?

Keywords:   activated patients, personalized medicine, digital health, exclusion

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