http://online.wsj.com/news/articles/SB10001424052702303722104579240140554518458Companies Use Information From Data Brokers, Pharmacies, Social Networks
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.
"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 law school. 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.