Have you ever done an online search to answer a medical question, only to be bombarded thereafter with ads for all sorts of related products? It's one thing for Zappos to keep posting ads showing the very shoes you previously looked at, but being followed by ads for personal health products can be downright creepy.
The Federal Trade Commission wants more details about how that happens. It has ordered nine data brokerage companies to provide extensive information about how they collect consumer data and how it's used, stored, analyzed and shared. It also wants details about whether consumers are allowed to see and correct their records, reports The New York Times.
The nine brokerage companies are Acxiom, Corelogic, Datalogix, eBureau, ID Analytics, Intelius, Peekyou, Rapleaf, and Recorded Future. The FTC plans to study the companies' answers to determine how to better protect consumer privacy, according to an announcement.
Though not specific to the gathering of health information, the move should have significant implications in that sector. In a report issued in March, the FTC called for greater transparency into the practice of data brokers, which do not interact with consumers, but which collect and sell information about them--often to advertisers who wish to target their messages to likely customers.
The framework issued in that report was considered a blueprint for future updates to the HIPAA law. It called upon Congress to create a "do not track" mechanism for online data and called upon companies to "provide consumers with reasonable access to the data ... proportionate to the sensitivity of the data and the nature of its use."
At this point, the law does not require data brokers to maintain the privacy of consumer data unless they use that data for credit, employment, insurance, housing, or other similar purposes.
The use of data mining is growing rapidly within healthcare. A Commonwealth Fund report just called data mining capability central to readiness for accountable care to track healthcare quality, spending, and use of services. Some hospitals, though, have been criticized for using data mining to target pitches to more affluent patients.
FierceEMR's Marla Durben Hirsch recently applauded American Health Association's call for more guidance on the appropriate use of EHR data. "We can't play by the rules if we don't know what they are, especially with so much at stake. When is automatic coding good and when is it bad? When is data mining good and when is it bad? Someone needs to share the rulebook," she wrote.