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Viewpoint
January 16, 2020

Sharing Patient Data Without Exploiting Patients

Author Affiliations
  • 1Department of Medical Ethics and Health Policy, University of Pennsylvania
  • 2Perelman School of Medicine, Department of Medical Ethics and Health Policy, University of Pennsylvania
JAMA. 2020;323(6):505-506. doi:10.1001/jama.2019.22354

In November 2019, The Wall Street Journal reported that Google had acquired access to millions of patient records through a partnership with the nonprofit hospital chain Ascension.1 Coming just months after Google and the University of Chicago were sued over a similar arrangement, news of the Ascension deal renewed debate about the ethics of health systems sharing data with big tech. However, this debate has focused narrowly on issues of patient consent and privacy, while neglecting the more fundamental ethical question of how to ensure that the benefits and burdens of data sharing are fairly distributed among patients, health systems, and technology companies.

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    1 Comment for this article
    EXPAND ALL
    How Patients can Benefit From Sharing Data
    Edward Eikman, MD | Moffitt Cancer Center and Research Institute at the University of South Florida (Ret.)
    The Viewpoint authors frame data sharing as an exploitation of the patient if there is an unequal sharing of benefits and harms from contributing to a valuable shared database.

    There are at least 2 ways patients can immediately benefit from data sharing:

    Data curated at the time of collection to a machine-actionable standard may concurrently afford real-time computational access to the shared database, with machine-assisted comparisons with matched patient groups; 

    Information of immediate value to the patient and physician might include prognosis, a review of management alternatives from others, or pitfalls encountered.

    As databases
    become larger and analyses more sophisticated, new personalized evidence may become available to assist the patient and physician in real-time care decisions.
    CONFLICT OF INTEREST: Patent Planned
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