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Unpatients—why patients should own their medical data

Nature Biotechnology volume 33, pages 921–924 (2015)Cite this article

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For the benefits of digital medicine to be fully realized, we need not only to find a shared home for personal health data but also to give individuals the right to own them.

It's often said that data are the new gold, or the new oil, but they are much more like a New World distinguished, at least in part, by new maps. Indeed, the planet is becoming a new world of relationships, descriptive data and information flows. There are now over 1.5 billion registrants on Facebook (Menlo Park, CA, USA), and a Swedish startup called Truecaller (Stockholm) has assembled a phone directory of >1.6 billion human beings, with the intent of having every person on the planet in its directory. Social graphs that depict relationships between people and organizations are the new maps of a connected humanity—maps of people, organizations and many other dimensions of data that reveal how things are related. As recent examples, we've seen months of activity data from 22 million Americans and over 250 million nights of sleep data1,2. Such global data efforts have not yet reached medicine, but their arrival is both inevitable and imminent.

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Figure 1: The medical data ownership engine.
Figure 2: The timeline for electronic medical data hacks in the United States of over 1 million individuals.

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Acknowledgements

Special thanks to J. Robinson, N. DiNiro and D. Maizenberg, members of the UnPatient team, for assistance; US National Institutes of Health grant NIH/NCATS 8 UL1 TR001114 for supporting E.J.T.; M. Miller for preparation; and J. Hightower for assistance with graphics.

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Authors and Affiliations

  1. Leonard J. Kish is at Unpatient.org, Denver, Colorado, USA.,

    Leonard J Kish

  2. Eric J. Topol is at The Scripps Research Institute, and Scripps Health, La Jolla, California, USA.,

    Eric J Topol

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Correspondence to Eric J Topol.

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Kish, L., Topol, E. Unpatients—why patients should own their medical data. Nat Biotechnol 33, 921–924 (2015). https://doi.org/10.1038/nbt.3340

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