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 health.
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 broker.
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 life-changing discoveries.
For example, researchers have used "big data" analytics to cut down on hospital readmissions, combat sepsis and 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 SAS to the data giant FICO 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 game and using consumer purchase data and financial records to make other kinds of health predictions.
"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 consumer scores 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 you drive.
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 day.
"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," says Dixon.
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 entities.
"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," he says.
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 information.
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 patients.
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," says Dulin.
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 example, 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 patients.
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 me."See related: Scared of Big Brother? Too late, says 'Big Data' co-author, 12 creepy details data collectors know about you
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