A growing number of health care companies are purchasing
intimate details about their patients -- such as their income and
buying habits -- and using it to make predictions about their
Unlike marketers, many of the health care providers and health
insurance companies that collect this kind of intelligence aren't
trying to sell more goods or services. Instead, they're trying to
identify which patients need extra help managing their health care
-- and keep them out of the emergency room.
"[We're trying to] understand the health care needs within our
community and within our health care and hospital community and
improve outcomes," says Dr. Michael Dulin,
chief clinical officer for analytics and outcomes research at
Carolinas HealthCare. The multistate health care network operates
hospitals and clinics all over North and South Carolina and has
just started looking at consumer data it purchased from a data
A growing market
Health care researchers have been collecting and analyzing huge
amounts of data for years. In just the past decade, the "data
exhaust" left by clinics and hospitals -- including electronic
medical records, physician notes and claims data -- has fueled
numerous research projects and led to some potentially
For example, researchers have used "big data" analytics to
cut down on hospital readmissions
take better care of newborns
. Now, some health care companies are taking data collection
efforts one step further and incorporating patients' personal and
financial details into their projects.
According to a review by CreditCards.com of white papers,
PowerPoint presentations and other business-to-business documents,
everyone from the health insurer
Blue Cross Blue Shield
to the major analytics company
to the data giant
is experimenting with or at least talking about using consumer data
for health care purposes.
FICO, for example, made waves in 2011 when it introduced the
Medication Adherence Score
, which uses consumer information and claims data to predict
whether or not you'll take your medication on time.
Meanwhile, smaller analytics companies, such as the
Massachusetts-based startup Predilytics, are also getting into the
using consumer purchase data
and financial records to make other kinds of health
"There's a whole new thing that's happening with health data and
predictive analytics," says Pam Dixon, executive director of the
World Privacy Forum. Earlier this year, Dixon looked at a number of
health care analytics projects for an
April 2014 report
on the hundreds of
data scientists have developed for different purposes. For example,
Johns Hopkins University's Hopkins Frailty Score uses health data
to predict how likely you are to experience serious complications
after a surgery.
Since then, she says she's heard from numerous people about
health-related scoring. "After publication, a lot of people came
forward and said this is happening," she says.
"There are entire conferences about it," adds Dixon. "They're
just going crazy with this stuff."
Experts say incorporating consumer data into predictive models
for health care is an especially hot topic now that the Affordable
Care Act has brought major changes to the health system. Health
insurance companies are no longer allowed to make underwriting
decisions based on your health status to manage costs. So they're
looking for other ways to drive down expenses and prevent people
from over-using costly health care services.
Meanwhile, hospitals are being penalized by the Centers for
Medicare and Medicaid Services for too many hospital readmissions,
and so researchers are furiously trying to come up with fresh ways
to care for patients.
Varied consumer data available
The data that goes into these research projects varies, but health
care researchers who contract with a data broker have access to a
startling amount of personal information. According to a May 2014
report by the Federal Trade Commission
, data brokers collect information about your court records and
criminal history, where you shop, what you buy, how much you make,
what you post online, whether or not you vote and what kind of car
In some cases, the data collection is so extensive that
researchers can figure out your personal habits, based entirely on
the trail of information you leave behind when you go about your
"Even though none of us have realized it, for the past five
years all of our financial transactions, what we purchase with
debit cards or credit cards, is being tracked," says the World
Privacy Forum's Dixon. And the information isn't anonymous, she
adds. "We know for sure from the FTC investigation that data
brokers are purchasing retail transactions attached to your name,"
That's led consumer advocates to cry foul when marketers and
health care companies try to use consumer data purchased from
third-party data brokers to target and research ordinary consumers.
The problem, they say, is that consumers don't know this
information is being shared with other companies and have no say
over how their personal details are being used by other
"They don't realize that information from these relatively
innocent events is being collected. It's being sliced and diced and
combined to form big data dossiers about them that are then sold to
companies," says Paul Stephens, director of privacy and advocacy at
Privacy Rights Clearinghouse.
James Giermanski of Belmont, North Carolina, agrees. He says he
doesn't mind if a health care provider uses his personal
information if he agrees to it. But if they buy the information
from a third-party data broker, "that's something different," he
says. "I don't support anything like that without the knowledge and
permission of the individual involved."
Health care researchers say they're interested in patients'
personal and lifestyle information because it can help shed light
on behaviors and environmental influences that don't necessarily
show up at a 20-minute visit to the doctor's office.
"When you think about health care, a lot of it is related to
just our everyday activities," explains Carolinas HealthCare's
Dulin. For example, if you smoke, eat poorly or spend most of your
day sitting down, you're more likely to develop a chronic disease,
such as diabetes or high blood pressure. "Those are really the
things that are most important, that drive your health outcomes,"
By collecting this information, health care providers hope
doctors and nurses will be able to give patients more personalized
advice. In some cases, providers may even be able to help patients
overcome some of the personal barriers preventing them from living
a healthier lifestyle.
However, consumer advocates say the quality of the information
that's being used for these projects may not be reliable. "Data
broker information is notoriously inaccurate," says Privacy Rights
ClearingHouse's Stephens. So providers may be relying on erroneous
Consumer advocates also worry the data collection could get out
of hand. While some organizations may be using the data simply to
advance their research and make smarter decisions about care,
consumer advocates worry that it will be used to unfairly profile
Dixon also worries that consumers' health scores may be shared
with other companies. Health care providers, such as Carolinas
HealthCare, are regulated by the Health Insurance Accountability
and Portability Act (HIPAA) and aren't allowed to share your
personal information with third parties. But if an analytics
company, such as FICO, generates a health score using alternative
data, such as your financial information, that's different.
"If it's not using health care data, it's not covered by HIPAA.
It can be sold," says Dixon. "That's our guess. That's our legal
guess." There's no telling then what other companies may do with
that information, she says. "Nothing's off the table yet."
Using consumer data for 'the greater good'
Dr. Michael Dulin of Carolinas HealthCare says that in his group's
case, researchers take special care with the data and don't let
anyone outside of a select group of people see it.
"We're very careful," says Dulin. "We understand that using the
data is not without risk." That's why the hospital network has
hired a data governance expert to help guide the researchers on
privacy and data security and has put systems in place to make sure
the data is being used properly. "We really have put a lot of
thought around the governance of the data itself," he says.
The rewards, in turn, are worth it, Dulin says. "There's a huge
potential impact when we do this right."
Already, Carolinas HealthCare has used community and clinical
data to figure out a wide range of interventions for its patients.
For example, by using population-level data about the communities
served by Carolinas HealthCare, the research team recently
discovered that a number of patients were having a hard time seeing
a doctor because they lived in a remote area of town with spotty
public transportation. "Our intervention in that case was to embed
a primary care physician in the neighborhood itself in order to
overcome that transportation barrier," says Dulin.
Now, the team is thinking about using household data it
purchased from a third-party data broker to pinpoint additional
interventions. "The consumer data that we're bringing in now, we're
still in the process of looking at that data and understanding it,"
The group hopes it will eventually be able to use the marketing
data it purchased -- ranging from a patient's income to how many
people live in a particular household -- to prevent problems before
they start. But they're not yet able to give specific details about
how exactly they'll use the data for prevention since they're just
now starting to look at it.
Dulin and his team are currently experimenting with using
patient risk scores based partially on consumer data to help
determine whether a patient is at higher risk for developing a
chronic health condition, such as heart disease or asthma.
The group is being selective about the data it uses. For
Bloomberg BusinessWeek reported
in July 2014 that Dulin's analytics team is using credit card
purchase data in its forecasting model. But Carolinas HealthCare
disputes that characterization and says it's not collecting
specific transaction information. So if you purchased cigarettes or
pizza, that information isn't going to be used in your health risk
score -- at least for now. (Dulin has voiced interest in this kind
of data, however. For example, in a
June 2014 interview
posted by Smart Data Collective, Dulin said that consumer
information "like the data that you provide when you swipe your
membership card at the gym and buy doughnuts" may be incorporated
into future projects.)
Physicians and nurses also won't be able to see what goes into a
patient's risk score. Instead, they'll only be given an estimate
that predicts how likely you are to develop a certain ailment,
which they can then use to tailor their recommendations to
According to Dulin, "big data" projects such as the risk score
model that his team is currently developing can have a
transformative impact on people's health.
As a primary care physician, he says that's especially rewarding
because it means he can potentially help an enormous amount of
people. "When we leverage the data, when we start to think about
populations as a whole, we can really have huge impacts on
patients' care," he says. "That kind of thing really excites
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