Unpatients—why patients should own their medical data

921 Leonard J. Kish is at Unpatient.org, Denver, Colorado, USA, and Eric J. Topol is at The Scripps Research Institute, and Scripps Health, La Jolla, California, USA.  etopol@scripps.edu I 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. In parallel to these social graphs and global data sets, there is an unprecedented and rapidly developing capability to digitize a human being. Creating the equivalent of a Google medical map or the medical essence of an individual would integrate multiple layers of phenomic, physiologic, anatomic, biologic and environmental information3. Just about everything that makes a human tick can now be quantified like never before, by means of sensors, sequencing, laboratory tests and scans. Recently, it has been shown that a single drop of blood could be used to reveal the virome of an individual’s exposure, uncovering not only which viruses the person was exposed to but when4,5, for just $25. This exemplifies our newfound and accelerated ability to capture and analyze human data, which most of us could not even fathom a few years ago. Such medically relevant data from an individual is not a one-off gathering. Rather than simply falling under the definition of ‘big data’, the data can be, and often are, obtained longitudinally, over the course of a lifetime, fulfilling the idea of ‘long data’. Furthermore, such data are contextualized, often in real time in a person’s real world. Enabled by mobile technology, an external ‘wisdom of the body’ (in contrast to Walter Cannon’s classically described autoregulation, homeostasis, in his book Wisdom of the Body6) can be developed, with feedback of integrated data to the individual . Soon enough, virtual medical assistants will emerge that incorporate machine learning about a person, and could include everything medical, as well as the person’s lifestyle, behavior, social network, finances and how they are interrelated. Quickly, one can imagine that, just from a watch that collects blood pressure with every heartbeat, terabytes of data can and will be generated on an individual basis. Much of the data will fall into the category of patient-generated data and will ultimately eclipse the amount of data captured today in clinical electronic medical records. Yet currently there is no ‘home’ for such data over time, at either the individual or the population level. Although there are early proposals for how some of it could be bundled with one’s electronic medical record7, it seems unlikely this will occur, in the United States at least, given the landscape of balkanized health records and multiple providers of care for each person. Ironically, we’re looking at the prospect of a new, high-definition picture of individual human beings, and at the same time for that person’s data to be homeless, dispersed and inaccessible. Where the data live will determine the maps we can create and the directions we can go in with health, both as individuals and as a society. We propose here that the key step to liberating personal health data and realizing their true potential in human research and clinical practice is the provision of data management systems that give individuals the right to own their own data. The technological advances developed for evolving digital currency systems, which allow individuals to hold and secure digital assets without a central authority, are being used to create new digital property systems, including personal medical data property. Whatever the means, it is critical for individuals to seize ownership of their data in order for the real benefits of a new, datadriven high-definition era of medicine to be actualized.