IEEE Spectrum June, 2015 - 55

Special Report

straightforward information, like how
much a wearer walks in a given day,
won't be in its purview.
But "medical grade" devices-for
example, sleep-apnea technologies
that regulate breathing-must get FDA
approval and typically require a doctor's prescription. And if these devices
collect information that might play a
significant role in how a doctor treats a
patient, a prescription would usually be
required for those too. But the companies that make such systems don't seem
interested in using a consumer-oriented
platform, such as a smartphone, for
handling the data they gather.
One example is iRhythm Technologies of San Francisco, which makes a
patch that heart patients wear for two
weeks to help cardiologists detect
arrhy thmias. Although the data
could be stored in, say, Apple's iCloud,
iRhythm instead uses Amazon.com's
servers because of the regulatory compliance they offer, says Kevin King, the
company's president and CEO.
Although medical professionals
have doubts about using consumergrade health monitors in the general
population, they believe that patients
with chronic conditions might benefit
enormously from them. Such patients
often get admitted to hospitals as a
result of an avoidable development.
Often, the patient's relapse is preceded by an easily detectable signal,
like a surge in blood sugar or blood
pressure-one that no one notices
because the patient is at home. Wearable digital devices would take the surprise out of such episodes, doctors say,
enabling them to track these patients
after discharge and to intervene with a
phone call. In many-if not most-cases,
patients could be kept out of the hospital with a relatively simple step, like
an increase in medication.
U.S. hospitals are under great pressure to reduce readmissions, because
iLLustration by

Jacob thomas

the argument

Hacking the Human OS

k á r i s t e fá n s s o n

Is PrIvacy
OverraTed?
iceland's decode geneTics wants
to sequence the DNA of the country's
small population-about 320,000 people-
and match it with a rich genealogical record
and national health databases. But not
everyone is keen on giving up their genetic
secrets. Decode's founder and CEO, Kári
Stefánsson, thinks people should stop
worrying about privacy and start thinking
about curing disease.
IEEE SpEctrum: what's the main
challenge to gathering massive
amounts of genetic and personal data
to make medical discoveries?
kári sTefánsson: The biggest
problem has to do with privacy. The
probability that anyone will use data like
these to hurt people is extraordinarily
small. It is just the perception that is
somewhat troubling. When you go to the
hospital or to your doctor, the probability
that the health care system can help
you is based upon the fact that those
who came before allowed information
about themselves to be used to make
discoveries. I think it is completely
unacceptable that you could demand
service from the health care system at
the same time as you refuse to have your
information used to make discoveries.

of changing federal reimbursement
policies that penalize hospitals when
patients are readmitted too quickly
after a discharge. "There is a lot of
potential promise in using digital home
monitoring in these cases to catch
these things while they're happening," says Penn's Hanson. "And being
able to intervene early is a holy grail."
Monitoring a select group of chronically ill patients to prevent their early
readmission to the hospital isn't quite

so privacy concerns get in the way of
medical breakthroughs?
Our queasiness when it comes to use of data is
making discoveries more difficult [and] more
costly. We have to find a way of convincing
people that this is one of their duties in society,
to allow information about themselves to be
used in the context of medical research.
in an ideal world, would decode have
unfettered access to all icelanders'
genomes? all humanity's?
We don't have unfettered access to anything.
All of our access is controlled by our National
Bioethics Committee and our Data Protection
Authority. We are tightly controlled, and
we should be. Over the past 18 years, not a
single data point has ever leaked out of this
building. No one has ever been hurt by the
data we have gathered. The only thing we have
done is to make discoveries that shed light
on the nature of disease, on the nature of the
human condition in general. So when you are
weighing the risks against the benefits, this
experience is extraordinarily valuable.
-Interview by Dave Levitan

the same as turning every sensor suite
and smartphone into a fitness coach,
let alone a sophisticated and continuous health monitor. But its usefulness
can be clinically proved, and tens of
billions of health care dollars could
be saved. That's a worthy goal in itself.
And if it's the start of something more
ambitious, so much the better. n
post your coMMEnts at http://spectrum.
ieee.org/techgiants0615

SPectrum.ieee.orG

north american

jun 2015

http://http:// http://www.ieee.org/techgiants0615 http://SPectrum.ieee.orG

Table of Contents for the Digital Edition of IEEE Spectrum June, 2015