C O M M E N TA R Y

Unpatients—why patients should own

their medical data
Leonard J Kish & Eric J Topol
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.

I t’s often said that data are the new gold, or the an individual’s exposure, uncovering not only of a new, high-definition picture of individual
© 2015 Nature America, Inc. All rights reserved.

new oil, but they are much more like a New which viruses the person was exposed to but human beings, and at the same time for that
World distinguished, at least in part, by new when4,5, for just $25. This exemplifies our new- person’s data to be homeless, dispersed and
maps. Indeed, the planet is becoming a new found and accelerated ability to capture and inaccessible. Where the data live will determine
world of relationships, descriptive data and analyze human data, which most of us could the maps we can create and the directions we
information flows. There are now over 1.5 bil- not even fathom a few years ago. can go in with health, both as individuals and
lion registrants on Facebook (Menlo Park, CA, Such medically relevant data from an indi- as a society. We propose here that the key step
USA), and a Swedish startup called Truecaller vidual is not a one-off gathering. Rather than to liberating personal health data and real-
(Stockholm) has assembled a phone directory simply falling under the definition of ‘big data’, izing their true potential in human research
of >1.6 billion human beings, with the intent of the data can be, and often are, obtained longi- and clinical practice is the provision of data
having every person on the planet in its direc- tudinally, over the course of a lifetime, fulfilling management systems that give individuals
tory. Social graphs that depict relationships the idea of ‘long data’. Furthermore, such data the right to own their own data. The techno-
between people and organizations are the new are contextualized, often in real time in a per- logical advances developed for evolving digital
maps of a connected humanity—maps of peo- son’s real world. Enabled by mobile technology, currency systems, which allow individuals to
ple, organizations and many other dimensions an external ‘wisdom of the body’ (in contrast hold and secure digital assets without a central
of data that reveal how things are related. As to Walter Cannon’s classically described auto- authority, are being used to create new digital
recent examples, we’ve seen months of activity regulation, homeostasis, in his book Wisdom of property systems, including personal medical
data from 22 million Americans and over 250 the Body6) can be developed, with feedback of data property. Whatever the means, it is critical
npg

million nights of sleep data1,2. Such global data integrated data to the individual (Fig. 1). Soon for individuals to seize ownership of their data
efforts have not yet reached medicine, but their enough, virtual medical assistants will emerge in order for the real benefits of a new, data-
arrival is both inevitable and imminent. that incorporate machine learning about a per- driven high-definition era of medicine to be
In parallel to these social graphs and global son, and could include everything medical, as actualized.
data sets, there is an unprecedented and rap- well as the person’s lifestyle, behavior, social
idly developing capability to digitize a human network, finances and how they are interre- Data, data, everywhere and nowhere
being. Creating the equivalent of a Google lated. Quickly, one can imagine that, just from Today, in the United States, health data live
medical map or the medical essence of an a watch that collects blood pressure with every in a plethora of places, from electronic health
individual would integrate multiple layers of heartbeat, terabytes of data can and will be gen- record (EHR) systems, insurance claims data-
phenomic, physiologic, anatomic, biologic erated on an individual basis. Much of the data bases, siloed personal health apps, research and
and environmental information3. Just about will fall into the category of patient-generated clinical trial databases, imaging files and lots
everything that makes a human tick can now data and will ultimately eclipse the amount of of paper. Although seemingly everywhere, any
be quantified like never before, by means of data captured today in clinical electronic medi- true semblance of an overarching organization
sensors, sequencing, laboratory tests and scans. cal records. or standardization of medical data are lacking,
Recently, it has been shown that a single drop Yet currently there is no ‘home’ for such whether at the individual or societal level.
of blood could be used to reveal the virome of data over time, at either the individual or the Health data are, categorically, quite difficult
population level. Although there are early to move from one place to another, and there
proposals for how some of it could be bundled are few to no incentives for sharing, a situation
Leonard J. Kish is at Unpatient.org, Denver, with one’s electronic medical record7, it seems that leads to extensive data hoarding. In the
Colorado, USA, and Eric J. Topol is at The unlikely this will occur, in the United States at United States, despite $30 billion in incentives
Scripps Research Institute, and Scripps Health, least, given the landscape of balkanized health to get data flowing, the problem of health data
La Jolla, California, USA. records and multiple providers of care for each locked into proprietary EHR systems is so bad
e-mail: [email protected] person. Ironically, we’re looking at the prospect that the US Office of the National Coordinator

NATURE BIOTECHNOLOGY VOLUME 33 NUMBER 9 SEPTEMBER 2015 921

 C O M M E N TA R Y

tant unmet need, we feel the time is ripe to

develop such a platform that brings together
all of an individual’s data—traditional doc-
tor-ordered laboratory tests, scans, visits and
patient-generated data.
Historically, the concepts of property
and democratization—spreading decision-
Big medicine making and knowledge—are deeply inter-
External ‹‹‹
‹‹‹‹‹‹‹‹‹‹‹‹
‹‹ information twined. Property and happiness were inex-
‹
wisdom of ‹‹ resource tricably linked in 1776; the US Declaration
‹
‹‹

the body of Independence’s declaration of our rights to

“life, liberty and the pursuit of happiness” is
thought to derive from John Locke’s writings
›››››››››››

on the right to “life, liberty and property.” And

property rights were a driving force of the revo-
lution. A patient-centered medical revolution
D e
at
›››

he will also require new rights. A platform that

l

a-s
h arin g fly w
››

‹‹
‹‹

captures all of a patient’s data cannot simply

‹‹
››

‹‹ ‹
‹‹
›
››› ‹‹‹
‹‹‹‹‹‹‹‹‹ be accessible to patients; it needs to be owned
and therefore controlled by the individuals
who contribute to it.
© 2015 Nature America, Inc. All rights reserved.

Yet a common refrain among governmental

healthcare leaders is, “it’s not about owner-
Figure 1 The medical data ownership engine. Each individual gets direct feedback of her/his
own generated data through biosensors, imaging, physical examination tools and laboratory tests, ship of data, it’s about access and control”15.
comprising a new ‘external’ wisdom of the body. Such data are fed into the flywheel of the engine Such a construct also overlooks one of the
and eventually, when there are enough individuals amassed into a big medicine resource, there is a oldest rules of law. The phrase “possession is
breakthrough to form a valuable medical knowledge resource. That, too, provides external feedback to nine-tenths of the law” arose because it is rela-
the individual for optimal prevention and medical treatment. tively easy to enforce ownership rights if one
has possession of something, but difficult to
for Health IT recently released a report on excuse not to share with anyone, including enforce otherwise. The same is true with data.
‘information blocking’, a term unique to the patients. It’s time to recognize we are in a new Simply put, if you don’t have possession, you
US healthcare system8. era, where patients have the tools and incen- will have to ask permission and be granted
Even worse than not being able to get to tives to do much more. access. A person cannot maintain true con-
the data, disorganization and balkaniza- In contrast to the legal and technical dif- trol when data live on someone else’s server.
tion contribute to poor outcomes and death. ficulty an individual faces to obtain all his A recent article entitled “The future of the web
According the US Department of Health and or her own medical data is the relative ease looks a lot like bitcoin” perhaps summarized
Human Services (Washington, DC, USA), an with which hackers have managed to breach it best: “We don’t own our data; we just visit it
estimated 20% of preventable medical errors ~100 million patient records in the first half from time to time”16.
npg

are due to the lack of immediate access to of 2015 (ref. 13; Fig. 2). The larger the set of Let’s not underestimate the economic value
health information9. Of the estimated 400,000 data, the more attractive it becomes as a target of ownership. For traditional (nondigital)
preventable medical errors leading to death in for hacking. On the other hand, not even 10% forms of property, clear ownership enabled
the United States annually, we can project that of Americans have attempted to access their by networks of trust has been argued to be
80,000 people die every year (or 220 per day) EHRs, let alone found that information in a the greatest difference between first world
because of the lack of needed access to medical format that was interpretable14. Clearly, a new and developing world economies. Property
information. solution is needed. drives the flow of commerce. Transactions
Furthermore, the US legal framework is con- become trusted when ownership is clear
structed in a manner to block individuals from The need for outright data ownership and networks are created to link seekers and
accessing their own medical data—in 49 of the In no other walk of life does an individual sellers of assets, leading to a greater number
50 states in America, these data are owned by pay for a service but not own what they have of transactions and greater transparency.
doctors and hospitals10. This ownership model bought. Yet in medicine this has been tol- According to economist Hernando de Soto,
is an outgrowth of an entrenched paternalism: erated for as long as there has been a paper “The moment Westerners were able to focus
the medical community’s belief that patients record, dating back hundreds of years, despite on the title of a house and not just the house
are unable to handle or deal with their data. the fact that the patient has a vested interest itself, they achieved a huge advantage over
Rigorous studies have proven just the oppo- in the uses of that information—it is he or the rest of humanity.” The data on the own-
site11; patients are fully capable of possessing she whose health is on the line. In the com- ership of the house, and a network to enable
and managing their own data, a capability that ing years, for many individuals, this issue will transfer of and use of assets, creates more
not only increases their sense of well-being but be further exacerbated—massive patient- flow of transactions and better economics.
also enhances bonding with their physician12. generated data sets will be flowing through To create a health data economy, we need to
Meanwhile, the Health Insurance Portability their mobile devices, which they own. At provide the same trust and increased flow.
and Accountability Act (HIPAA), defined in present, no system for integrating such data We continue to see the same principles play
the pre-internet era, has largely become an between apps exists. Anticipating this impor- out in the most successful platforms of this

922 VOLUME 33 NUMBER 9 SEPTEMBER 2015 NATURE BIOTECHNOLOGY

 C O M M E N TA R Y

era of the internet. Similar mechanisms are incentive to join as each could make their to the originator; second, controlled by the
playing out with Uber (San Francisco, CA, own proprietary data more valuable by con- person they came from or their agent; third,
USA) and Airbnb (San Francisco), now mul- tributing and receiving other’s contributions. unique and verifiable as belonging to a real
tibillion companies that have simply enabled Patients are already motivated to contrib- person; fourth, privacy-enabled; fifth, secure;
platforms for what are initially ‘surplus ute. Polls consistently show 80% of consumers sixth, independent of any third party; and
resources’ of car transportation and shelter, are eager to share their medical informa- finally, able to solve the data provenance prob-
respectively, and now have created econo- tion, provided its privacy and security can lem, that is, when, where and from whom the
mies of their own. In the case of Airbnb, be assured17. The ability to share the rich data came.
some areas are being revitalized with tour- granular data from each individual to create An ideal digital ownership system would
ists in towns where sleeping accommodations a global resource leads to a flywheel effect foster better trust in the accuracy of data; con-
were previously inadequate. An emergent (Fig. 1). Two feedback loops are engendered nect people to facilitate enhanced sharing,
system more responsive to individual needs by the medical data ownership engine: the anonymity and security; create a single system
has arisen. external wisdom of the individual’s body and of exchange, standard methods of exchange
And we suggest the same can and will be the wisdom of the population participants. and better metadata to assess the value of a
true with health data. It’s not so much about Data matching the ‘nearest neighbor’ Google piece of information; and finally enable ways
the data; it’s about the ownership of the data. medical map from the population to the indi- for all involved to benefit from sharing so as
Without ownership, there can be no trusted vidual provides a potentially valuable knowl- to maximize sharing and value.
exchange. What we have now is like trying to edge resource for improved prevention and
create an Uber without knowing who owns treatment—a resource that heretofore has not Where to go from here
the cars or an Airbnb without an owner of existed but is now eminently attainable. If we How could we transition to a new model and
the homes. It’s common to hear how our can amalgamate more than a billion members construct such a system? Bitcoin’s underlying
© 2015 Nature America, Inc. All rights reserved.

health system should be ‘patient-centered’, for a social network or a global phone direc- technology points to ways to enable digital
but without clear rights around how it can be tory, surely this, too, can be achieved—if we property on a global platform. Bitcoins are
used, shared and leveraged by the individual, can override the obstacles. bits of digital property (‘coins’ are a ledger of
it cannot reach its full potential. To build a Are personal data, in particular biologi- transactions, a shared database of who owns
truly thriving health data economy, we need cal data, forms of property to be bought and what at a given point in time). Ownership
to harness the power of data ownership. sold? Should they be? Since the late twentieth is enabled by network consensus. Although
Of course, data are different from physical century prominent legal scholars have been there are certainly negative impressions
assets. Data can be easily copied yet become mostly divided into two camps regarding about bitcoin, its digital ownership model
more, not less, valuable when shared, aggre- ‘propertization’ of personal data: entirely for creates a shared, agreed-upon record of data.
gated and analyzed. But like physical assets, it, mostly from a techno-libertarian perspec- Using and repurposing of the block chain,
medical data sharing can be likened to the tive or entirely against it, fearing for privacy wallets and ‘proof of work’ components are
‘tragedy of the commons’, where individuals and human dignity. Finding common ground already being adapted for multiple forms of
acting independently and rationally accord- between these two perspectives has been his- data that are beginning to look like a global,
ing to each’s self-interest behave contrary torically challenging. One reason, we sub- distributed data ownership store. A world-
to the best interests of the whole group mit, is because the solutions have not been wide health data graph enabled by health
by depleting or hoarding some common in place to easily facilitate both trade and data ownership may not be far behind16.
resource. Still, some of the same mechanisms privacy. Through the efforts of a nonprofit, Once the infrastructure is built with clients
npg

can be used to enable the exchange of health social benefit organization (http://unpatient. and nodes for such a data network, transfer-
data in the same way platforms and owner- org/), we have proposed a technological solu- ring secure health data could be as easy as
ship enable the exchange of real world assets. tion that allows biomedical data to be shared sending an e-mail is today. When an indi-
Health data are certainly another kind of and traded as property at a very granular level, vidual wants to receive an element of their
‘surplus resource’; it’s not currently creat- but that retains the privacy and security nec- record, the data sender sends it to the indi-
ing much value without ownership and a essary for human dignity and in compliance vidual’s public address or public key (which
platform to facilitate exchange. Yet if such a with existing regulations. could be displayed as a QR code on a smart
system were enabled, it would allow sharing For health data to have a real home owned phone). It would then be signed by the sender’s
and transactions of data globally in a more by its rightful owner, they need to be: first, private key and could be opened only with the
adaptive fashion. Each party would have an accessible anywhere and always available individual’s private key.

80 M

2.1 M 1.3 M 1.5 M 1.2 M 1.7 M 1.9 M 1.6 M 1M 1.9 M 4M 4.5 M 11 M 4.5 M

U Miami U Utah Health AvMed Jacobi Health Nemours Cascade Health Advocate Community Premera BC UCLA
Net Net Net
Anthem
April June Nov Feb Feb March Oct April July July August Feb March July

2008 2009 2010 2011 2013 2014 2015

Figure 2 The timeline for electronic medical data hacks in the United States of over 1 million individuals. The graphic does not include a large number of
hacks in this time period <1 million individuals.

NATURE BIOTECHNOLOGY VOLUME 33 NUMBER 9 SEPTEMBER 2015 923

 C O M M E N TA R Y

Different health data structures could be ability problems would no longer belong to the ACKNOWLEDGMENT
accommodated within different wallet address provider and their vendor. Without supporting Special thanks to J. Robinson, N. DiNiro and
D. Maizenberg, members of the UnPatient team, for
structures. The creation of a new global infra- and contributing, current providers and vendors
assistance; US National Institutes of Health grant
structure for data, accessible through Bitcoin could become the taxi companies and hoteliers NIH/NCATS 8 UL1 TR001114 for supporting E.J.T.;
wallet addresses, or something like them, has caught fighting for survival as new, more effec- M. Miller for preparation; and J. Hightower for
the potential to provide a universal patient tive platforms begin to compete. assistance with graphics.
identification mechanism, which separates
personal information from health data as each Conclusions COMPETING FINANCIAL INTERESTS
The authors declare no competing financial interests.
data element can exist and be trusted indepen- We must begin talking about creating a health
dently. Peer-to-peer data stores could provide data resource in a much broader and more uni- 1. Bachman, R. The United States of Fitness. Wall Street
the mechanism to save any kind of file type inde- versal context, controlled by the individuals who Journal (26 May; accessed 5 July 2015). http://
pendent of a third party, much like Bitcoin is supply the data. This is a unique moment where online.wsj.com/public/resources/documents/print/
WSJ_-D001–20150526.pdf
intended to provide stores of value independent we may be able to provide for personal control 2. O’Brien, J. Can big data help you get a good night’s
of any central authority. Peer-to-peer networks and, at the same time, create a global knowledge sleep? Fortune (29 June 2015). http://fortune.
com/2015/06/29/sleep-data/
of data would also offer better adaptation and medical resource.
3. Topol, E.J. Cell 157, 241–253 (2014).
responsiveness to changing conditions, creat- We have coined the term ‘UnPatient’ for our 4. Xu, G.J. et al. Science 348, aaa0698 (2015).
ing a system that evolves and learns quickly. new model of data ownership as it has the dou- 5. HHMI. Your viral infection history from a single drop of
blood (4 June; accessed 7 July 2015). http://www.hhmi.
In addition, block chain–related technologies ble entendre of the patient subjected to medi- org/news/your-viral-infection-history-single-drop-blood
could help solve the data-provenance problem cal paternalism and information asymmetries, 6. Cannon, W.B. The Wisdom of the Body (W.W. Norton &
as such systems would provide a record of when along with the idea that it has taken far too long Company, Inc., New York, NY, USA, 1932).
7. Mandl, D.M., Mandel, J.C. & Kohane, I.S. Cell Syst. 1,
and from where a piece of data came, with a digi- 8–13 (2015).
© 2015 Nature America, Inc. All rights reserved.

tal signature, creating the potential to visualize a 8. The Office of the National Coordinator for Health
data supply chain.
This is a unique moment where Information Technology (ONC). Report to Congress April
2015: Report on Health Information Blocking. (Health
There are already models to achieve individ- we may be able to provide for IT, 9 April; accessed 7 July 2015). http://healthit.gov/
ual ownership such as Switzerland’s Healthbank, personal control and, at the same sites/default/files/reports/info_blocking_040915.pdf
9. Fickenscher, K.M. J. Am. Med. Inform. Assoc. 20,
an entity owned and governed by its citizen 593–594 (2013).
members (https://www.healthbank.coop). For time, create a global knowledge 10. Robert Wood Johnson Foundation. Individual access
to medical records: 50 state comparison. Health
no charge, Healthbank empowers users to store, medical resource. Information & the Law (24 September 2013; accessed
manage, share and benefit from their personal 7 July 2015). http://www.healthinfolaw.org/comparative-
health information according to each user’s indi- analysis/individual-access-medical-records-50-state-
comparison.
vidual needs. It has the intent to create a global to become free to use our medical data as we see
11. Topol, E.J. The Patient Will See You Now (Basic Books;
data transaction platform to support medical fit and to own it. Without connecting to their New York, NY, 2015).
research. The benefit of using a distributed, medical data, people are unnecessarily being 12. Kish, L. The blockbuster drug of the century: an
engaged patient. HL7 Standards. (28 August 2012;
peer-to-peer data store, however, is that it would hurt and dying. Accordingly, we urgently seek accessed 6 July 2015). http://www.hl7standards.com/
not need to be managed or controlled by any to promote ownership of one’s medical data as blog/2012/08/28/drug-of-the-century/
third party, no matter how well intentioned; it a civil right and as a pivotal strategy to further 13. Collins, K. A quick guide to the worst corporate hack
attacks (18 March; accessed 6 July 2015). http://www.
would be controlled by contributors on a truly digitize medicine, providing a new resource to bloomberg.com/graphics/2014-data-breaches/.
global scale. potentially help every individual who willingly 14. Beck, M. How to take charge of your medical records.
npg

A global resource for hosting and sharing Wall Street Journal. (29 June 2015). http://www.wsj.
participates. This is the essence of the benefits
com/articles/SB123672247879339940213045810
personal health data would have compelling of democratization: shared control provides 64031716335262.
benefits not only for medical research and treat- shared benefits at an exponential rate. When 15. h t t p s : / / t w i t t e r . c o m / F a r z a d _ M D / s t a t u s /​
587233286230945792. Accessed 7 July 2015.
ment but also for current data hoarders if they individuals inform the collective, and the col- 16. Peck, M.E. The future of the web looks a lot like bitcoin.
choose to adapt. Imagine if there were minimal lective informs the individual, we will have the Spectrum IEEE (1 July; accessed 2 July 2015). http://
storage fees and data management fees, but indi- learning health system we seek. spectrum.ieee.org/computing/networks/the-future-of-
the-web-looks-a-lot-like-bitcoin
vidual records were a part of the universal store. People connecting over information to create 17. Chu, S. Apple watch release news: survey finds 80
Costs for each participant would be minimized value and share assets has been the story of our percent of US employees would give health data from
greatly, whereas each element of data, because of wearables to employers. iDigitalTimes (2 February;
economy for the past 20 years. So, too, will it be
accessed 7 July 2015). http://www.idigitaltimes.com/
the flywheel of virtuous feedback (Fig. 1), would with sharing and leveraging medical data in the apple-watch-release-news-survey-finds-80-percent-us-
become more valuable, and many interoper- next 20 years. employees-would-give-health-data-411578

924 VOLUME 33 NUMBER 9 SEPTEMBER 2015 NATURE BIOTECHNOLOGY