Some health-care companies are pulling back the curtain on medical privacy without ever accessing personal medical records, by probing readily available information from data brokers, pharmacies and social networks that offer indirect clues to an individual’s health.
Companies specializing in patient recruitment for clinical trials use hundreds of data points—from age and race to shopping habits—to identify the sick and target them with telemarketing calls and direct-mail pitches to participate in research.
Blue Chip Marketing Worldwide, a drug-industry contractor, found patients for an obesity drug by targeting people with characteristics suggestive of a sedentary lifestyle, like subscribing to premium cable TV and frequent fast-food dining. Acurian Inc., one of the largest recruitment companies, says innocuous personal details—a preference for jazz, owning a cat or participation in sweepstakes—helped it home in on patients for an arthritis study.
Some health-care companies are pulling back the curtain on medical privacy without ever accessing personal medical records, by probing readily available information from data brokers, pharmacies and social networks. Joseph Walker reports. Photo: Getty Images.
“We are now at a point where, based on your credit-card history, and whether you drive an American automobile and several other lifestyle factors, we can get a very, very close bead on whether or not you have the disease state we’re looking at,” said Roger Smith, senior vice president of operations at Horsham, Pa.-based Acurian, a unit of Pharmaceutical Product Development LLC.
Targeted advertising has long been used in the retail industry, but its use in health care is raising new concerns. Privacy experts and bioethicists say that as data-mining methods become more sophisticated, it is becoming harder to keep medical conditions private. Targeted consumers have complained to regulators about intrusive tactics and worries that their medical records have been compromised.
“My private information, especially my medical information, I’m extremely protective of it,” says Delbert Kerby, 62 years old, of Rocklin, Calif. The telecommunications consultant says he was surprised when telemarketers called him last year about a study of arthritis. The company didn’t leave its name, he says, but he filed a complaint with the Federal Trade Commission about the call. (He has arthritis but has no idea how the company targeted him.)
Federal law bars doctors, insurers and other health-care providers from sharing or selling personally identifiable information in patients’ medical records without permission, under the Health Insurance Portability and Accountability Act, or HIPAA. The law doesn’t, however, protect the clues that people leave about their health outside of their medical records—when they make credit-card purchases or search the Internet. Law professor Nicolas P. Terry calls such information “medically inflected data.”
“I think patients would be shocked to find out how little privacy protection they have outside of traditional health care,” says Mr. Terry, professor and co-director at the Center for Law and Health at Indiana University’s McKinney School of Law. He adds, “Big Data essentially can operate in a HIPAA-free zone.”
Research firms and patient recruiters, including both Blue Chip and Acurian, say they abide by HIPAA and privacy laws.
Experian EXPN.LN -0.28% PLC, the Dublin, Ireland-based data broker and credit-reporting company, says its marketing-services unit sells data to numerous health-care marketing companies. “However, we do not share any protected health information, and therefore are not providing data that would fall into HIPAA requirements,” says Gerry Tschopp, senior vice president for public affairs.
A driver of the trend is the need to speed up recruitment and completion of clinical trials. Drug makers often need thousands of patients for late-stage trials, which can take years to accomplish, lengthening the time it takes to bring a drug to market while the clock is running on the drug’s patent exclusivity.
When Orexigen Therapeutics Inc., OREX -2.36% a La Jolla, Calif.-based biotechnology company, needed to enroll 9,000 patients into a study of its diet drug Contrave last year, it turned to Blue Chip. Consultants had said it would take two years to finish enrollment, a timeline that was “not acceptable,” says Mark Booth, Orexigen’s chief commercial officer.
Blue Chip, of Northbrook, Ill., recruited half of all study patients, helping to complete enrollment in a little over six months, Mr. Booth says. With consumer profiles purchased from data companies like Experian, Blue Chip applied a computer algorithm to flag clues about a person’s weight, such as fast-food dining and a history of shopping online for clothes, a trait indicative of obesity because overweight people often can’t find plus-sizes in traditional stores or are uncomfortable shopping in public, Blue Chip says.
“The types of magazines you buy, how often you buy running shorts, all of those things tell a story,” says Blue Chip Executive Vice President Ken Shore.
Orexigen said last week it had submitted a new drug application for Contrave, and the FDA could make a decision in 2014.
The majority of patients are still recruited through traditional channels such as health-care providers and television ads; newer methods like data mining and social networks account for about 14% of the tactics used by drug makers and their contractors, according to the Tufts Center for the Study of Drug Development. Blue Chip, which also uses traditional advertising, says it charges about $2,000 for each patient it enrolls into a study.
Profiling patients based on demographics and purchasing habits, however, can be more effective in finding people who aren’t online or haven’t recently sought medical treatment, recruitment professionals say.
FTC Commissioner Julie Brill says she is worried that the use of nonprotected consumer data can be used to deny employment or inadvertently reveal illnesses that people want kept secret. “As Big Data algorithms become more accurate and powerful, consumers need to know a lot more about the ways in which their data is used,” Ms. Brill says.
Acurian, which has worked with large drug and medical-device companies such as Eli LillyLLY +0.06% & Co. and Medtronic Inc., MDT +0.44% has been the subject of more than 500 complaints to the FTC over the past two years, alleging violations of telemarketing laws, according to records obtained through a public records request. The FTC hasn’t taken any actions against Acurian, said agency spokesman Mitchell Katz. The commission doesn’t comment on current investigations as a matter of policy, he said.
Acurian, named as a defendant in a federal lawsuit related to its telemarketing practices, declined to comment on the allegations. In court documents, the company has said that calls related to medical studies aren’t advertisements as defined by law.
A Medtronic spokeswoman said the company had hired Acurian for projects like contacting patients from completed studies, but not to identify new study subjects. An Eli Lilly spokeswoman said the company works with Acurian on recruitment campaigns, including through direct mail.
Larna Godsey, of Wichita, Kan., says she received a dozen phone calls about a diabetes drug study over the past year from a company that didn’t identify itself. Ms. Godsey, 63, doesn’t suffer from the disease, but she has researched it on the Internet and donated to diabetes-related causes. “I don’t know if it’s just a coincidence or if they’re somehow getting my information,” says Ms. Godsey, who filed a complaint with the FTC this year.