C O M M E N TA R Y

Unpatientswhy patients should own

their medical data
Leonard J Kish & Eric J Topol

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2015 Nature America, Inc. All rights reserved.

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.

ts 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 humanitymaps of people, organizations and many other dimensions
of data that reveal how things are related. As
recent examples, weve 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
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.
e-mail: etopol@scripps.edu

an individuals 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 persons real world. Enabled by mobile technology,
an external wisdom of the body (in contrast
to Walter Cannons classically described autoregulation, homeostasis, in his book Wisdom of
the Body6) can be developed, with feedback of
integrated data to the individual (Fig. 1). Soon
enough, virtual medical assistants will emerge
that incorporate machine learning about a person, and could include everything medical, as
well as the persons 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 ones 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, were looking at the prospect

NATURE BIOTECHNOLOGY VOLUME 33 NUMBER 9 SEPTEMBER 2015

of a new, high-definition picture of individual

human beings, and at the same time for that
persons 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.
Data, data, everywhere and nowhere
Today, in the United States, health data live
in a plethora of places, from electronic health
record (EHR) systems, insurance claims databases, siloed personal health apps, research and
clinical trial databases, imaging files and lots
of paper. Although seemingly everywhere, any
true semblance of an overarching organization
or standardization of medical data are lacking,
whether at the individual or societal level.
Health data are, categorically, quite difficult
to move from one place to another, and there
are few to no incentives for sharing, a situation
that leads to extensive data hoarding. In the
United States, despite $30 billion in incentives
to get data flowing, the problem of health data
locked into proprietary EHR systems is so bad
that the US Office of the National Coordinator
921

 2015 Nature America, Inc. All rights reserved.

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he

at

Big medicine
information
resource

a-s

h arin g fly w

External
wisdom of
the body

C O M M E N TA R Y

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,
comprising a new external wisdom of the body. Such data are fed into the flywheel of the engine
and eventually, when there are enough individuals amassed into a big medicine resource, there is a
breakthrough to form a valuable medical knowledge resource. That, too, provides external feedback to
the individual for optimal prevention and medical treatment.

for Health IT recently released a report on

information blocking, a term unique to the
US healthcare system8.
Even worse than not being able to get to
the data, disorganization and balkanization contribute to poor outcomes and death.
According the US Department of Health and
Human Services (Washington, DC, USA), an
estimated 20% of preventable medical errors
are due to the lack of immediate access to
health information9. Of the estimated 400,000
preventable medical errors leading to death in
the United States annually, we can project that
80,000 people die every year (or 220 per day)
because of the lack of needed access to medical
information.
Furthermore, the US legal framework is constructed in a manner to block individuals from
accessing their own medical datain 49 of the
50 states in America, these data are owned by
doctors and hospitals10. This ownership model
is an outgrowth of an entrenched paternalism:
the medical communitys belief that patients
are unable to handle or deal with their data.
Rigorous studies have proven just the opposite11; patients are fully capable of possessing
and managing their own data, a capability that
not only increases their sense of well-being but
also enhances bonding with their physician12.
Meanwhile, the Health Insurance Portability
and Accountability Act (HIPAA), defined in
the pre-internet era, has largely become an
922

excuse not to share with anyone, including

patients. Its time to recognize we are in a new
era, where patients have the tools and incentives to do much more.
In contrast to the legal and technical difficulty an individual faces to obtain all his
or her own medical data is the relative ease
with which hackers have managed to breach
~100 million patient records in the first half
of 2015 (ref. 13; Fig. 2). The larger the set of
data, the more attractive it becomes as a target
for hacking. On the other hand, not even 10%
of Americans have attempted to access their
EHRs, let alone found that information in a
format that was interpretable14. Clearly, a new
solution is needed.
The need for outright data ownership
In no other walk of life does an individual
pay for a service but not own what they have
bought. Yet in medicine this has been tolerated for as long as there has been a paper
record, dating back hundreds of years, despite
the fact that the patient has a vested interest
in the uses of that informationit is he or
she whose health is on the line. In the coming years, for many individuals, this issue will
be further exacerbatedmassive patientgenerated data sets will be flowing through
their mobile devices, which they own. At
present, no system for integrating such data
between apps exists. Anticipating this impor-

tant unmet need, we feel the time is ripe to

develop such a platform that brings together
all of an individuals datatraditional doctor-ordered laboratory tests, scans, visits and
patient-generated data.
Historically, the concepts of property
and democratizationspreading decisionmaking and knowledgeare deeply intertwined. Property and happiness were inextricably linked in 1776; the US Declaration
of Independences declaration of our rights to
life, liberty and the pursuit of happiness is
thought to derive from John Lockes writings
on the right to life, liberty and property. And
property rights were a driving force of the revolution. A patient-centered medical revolution
will also require new rights. A platform that
captures all of a patients data cannot simply
be accessible to patients; it needs to be owned
and therefore controlled by the individuals
who contribute to it.
Yet a common refrain among governmental
healthcare leaders is, its not about ownership of data, its about access and control15.
Such a construct also overlooks one of the
oldest rules of law. The phrase possession is
nine-tenths of the law arose because it is relatively easy to enforce ownership rights if one
has possession of something, but difficult to
enforce otherwise. The same is true with data.
Simply put, if you dont have possession, you
will have to ask permission and be granted
access. A person cannot maintain true control when data live on someone elses server.
A recent article entitled The future of the web
looks a lot like bitcoin perhaps summarized
it best: We dont own our data; we just visit it
from time to time16.
Lets not underestimate the economic value
of ownership. For traditional (nondigital)
forms of property, clear ownership enabled
by networks of trust has been argued to be
the greatest difference between first world
and developing world economies. Property
drives the flow of commerce. Transactions
become trusted when ownership is clear
and networks are created to link seekers and
sellers of assets, leading to a greater number
of transactions and greater transparency.
According to economist Hernando de Soto,
The moment Westerners were able to focus
on the title of a house and not just the house
itself, they achieved a huge advantage over
the rest of humanity. The data on the ownership of the house, and a network to enable
transfer of and use of assets, creates more
flow of transactions and better economics.
To create a health data economy, we need to
provide the same trust and increased flow.
We continue to see the same principles play
out in the most successful platforms of this

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C O M M E N TA R Y
era of the internet. Similar mechanisms are
playing out with Uber (San Francisco, CA,
USA) and Airbnb (San Francisco), now multibillion companies that have simply enabled
platforms for what are initially surplus
resources of car transportation and shelter,
respectively, and now have created economies of their own. In the case of Airbnb,
some areas are being revitalized with tourists in towns where sleeping accommodations
were previously inadequate. An emergent
system more responsive to individual needs
has arisen.
And we suggest the same can and will be
true with health data. Its not so much about
the data; its about the ownership of the data.
Without ownership, there can be no trusted
exchange. What we have now is like trying to
create an Uber without knowing who owns
the cars or an Airbnb without an owner of
the homes. Its common to hear how our
health system should be patient-centered,
but without clear rights around how it can be
used, shared and leveraged by the individual,
it cannot reach its full potential. To build a
truly thriving health data economy, we need
to harness the power of data ownership.
Of course, data are different from physical
assets. Data can be easily copied yet become
more, not less, valuable when shared, aggregated and analyzed. But like physical assets,
medical data sharing can be likened to the
tragedy of the commons, where individuals
acting independently and rationally according to eachs self-interest behave contrary
to the best interests of the whole group
by depleting or hoarding some common
resource. Still, some of the same mechanisms
can be used to enable the exchange of health
data in the same way platforms and ownership enable the exchange of real world assets.
Health data are certainly another kind of
surplus resource; its not currently creating much value without ownership and a
platform to facilitate exchange. Yet if such a
system were enabled, it would allow sharing
and transactions of data globally in a more
adaptive fashion. Each party would have an

incentive to join as each could make their

own proprietary data more valuable by contributing and receiving others contributions.
Patients are already motivated to contribute. Polls consistently show 80% of consumers
are eager to share their medical information, provided its privacy and security can
be assured17. The ability to share the rich
granular data from each individual to create
a global resource leads to a flywheel effect
(Fig. 1). Two feedback loops are engendered
by the medical data ownership engine: the
external wisdom of the individuals body and
the wisdom of the population participants.
Data matching the nearest neighbor Google
medical map from the population to the individual provides a potentially valuable knowledge resource for improved prevention and
treatmenta resource that heretofore has not
existed but is now eminently attainable. If we
can amalgamate more than a billion members
for a social network or a global phone directory, surely this, too, can be achievedif we
can override the obstacles.
Are personal data, in particular biological data, forms of property to be bought and
sold? Should they be? Since the late twentieth
century prominent legal scholars have been
mostly divided into two camps regarding
propertization of personal data: entirely for
it, mostly from a techno-libertarian perspective or entirely against it, fearing for privacy
and human dignity. Finding common ground
between these two perspectives has been historically challenging. One reason, we submit, is because the solutions have not been
in place to easily facilitate both trade and
privacy. Through the efforts of a nonprofit,
social benefit organization (http://unpatient.
org/), we have proposed a technological solution that allows biomedical data to be shared
and traded as property at a very granular level,
but that retains the privacy and security necessary for human dignity and in compliance
with existing regulations.
For health data to have a real home owned
by its rightful owner, they need to be: first,
accessible anywhere and always available

to the originator; second, controlled by the

person they came from or their agent; third,
unique and verifiable as belonging to a real
person; fourth, privacy-enabled; fifth, secure;
sixth, independent of any third party; and
finally, able to solve the data provenance problem, that is, when, where and from whom the
data came.
An ideal digital ownership system would
foster better trust in the accuracy of data; connect people to facilitate enhanced sharing,
anonymity and security; create a single system
of exchange, standard methods of exchange
and better metadata to assess the value of a
piece of information; and finally enable ways
for all involved to benefit from sharing so as
to maximize sharing and value.
Where to go from here
How could we transition to a new model and
construct such a system? Bitcoins underlying
technology points to ways to enable digital
property on a global platform. Bitcoins are
bits of digital property (coins are a ledger of
transactions, a shared database of who owns
what at a given point in time). Ownership
is enabled by network consensus. Although
there are certainly negative impressions
about bitcoin, its digital ownership model
creates a shared, agreed-upon record of data.
Using and repurposing of the block chain,
wallets and proof of work components are
already being adapted for multiple forms of
data that are beginning to look like a global,
distributed data ownership store. A worldwide health data graph enabled by health
data ownership may not be far behind16.
Once the infrastructure is built with clients
and nodes for such a data network, transferring secure health data could be as easy as
sending an e-mail is today. When an individual wants to receive an element of their
record, the data sender sends it to the individuals public address or public key (which
could be displayed as a QR code on a smart
phone). It would then be signed by the senders
private key and could be opened only with the
individuals 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

U Miami

U Utah

Health
Net

AvMed Jacobi

Health
Net

Nemours

1M

1.9 M

Cascade Health
Net

4M

4.5 M

11 M

4.5 M

Advocate

Community

Premera BC

UCLA

March

July

Anthem

April

June

2008

Nov

Feb

2009

2010

Feb

March

Oct

April

2011

July

2013

July

August

2014

Feb

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

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C O M M E N TA R Y
Different health data structures could be
accommodated within different wallet address
structures. The creation of a new global infrastructure for data, accessible through Bitcoin
wallet addresses, or something like them, has
the potential to provide a universal patient
identification mechanism, which separates
personal information from health data as each
data element can exist and be trusted independently. Peer-to-peer data stores could provide
the mechanism to save any kind of file type independent of a third party, much like Bitcoin is
intended to provide stores of value independent
of any central authority. Peer-to-peer networks
of data would also offer better adaptation and
responsiveness to changing conditions, creating a system that evolves and learns quickly.
In addition, block chainrelated technologies
could help solve the data-provenance problem
as such systems would provide a record of when
and from where a piece of data came, with a digital signature, creating the potential to visualize a
data supply chain.
There are already models to achieve individual ownership such as Switzerlands Healthbank,
an entity owned and governed by its citizen
members (https://www.healthbank.coop). For
no charge, Healthbank empowers users to store,
manage, share and benefit from their personal
health information according to each users individual needs. It has the intent to create a global
data transaction platform to support medical
research. The benefit of using a distributed,
peer-to-peer data store, however, is that it would
not need to be managed or controlled by any
third party, no matter how well intentioned; it
would be controlled by contributors on a truly
global scale.
A global resource for hosting and sharing
personal health data would have compelling
benefits not only for medical research and treatment but also for current data hoarders if they
choose to adapt. Imagine if there were minimal
storage fees and data management fees, but individual records were a part of the universal store.
Costs for each participant would be minimized
greatly, whereas each element of data, because of
the flywheel of virtuous feedback (Fig. 1), would
become more valuable, and many interoper-

924

ability problems would no longer belong to the

provider and their vendor. Without supporting
and contributing, current providers and vendors
could become the taxi companies and hoteliers
caught fighting for survival as new, more effective platforms begin to compete.

ACKNOWLEDGMENT
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.

Conclusions
We must begin talking about creating a health
data resource in a much broader and more universal context, controlled by the individuals who
supply the data. This is a unique moment where
we may be able to provide for personal control
and, at the same time, create a global knowledge
medical resource.
We have coined the term UnPatient for our
new model of data ownership as it has the double entendre of the patient subjected to medical paternalism and information asymmetries,
along with the idea that it has taken far too long

COMPETING FINANCIAL INTERESTS

The authors declare no competing financial interests.

This is a unique moment where

we may be able to provide for
personal control and, at the same
time, create a global knowledge
medical resource.
to become free to use our medical data as we see
fit and to own it. Without connecting to their
medical data, people are unnecessarily being
hurt and dying. Accordingly, we urgently seek
to promote ownership of ones medical data as
a civil right and as a pivotal strategy to further
digitize medicine, providing a new resource to
potentially help every individual who willingly
participates. This is the essence of the benefits
of democratization: shared control provides
shared benefits at an exponential rate. When
individuals inform the collective, and the collective informs the individual, we will have the
learning health system we seek.
People connecting over information to create
value and share assets has been the story of our
economy for the past 20 years. So, too, will it be
with sharing and leveraging medical data in the
next 20 years.

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