The market for medical information is so opaque that many doctors and patients don't realize data from a lab or electronic health record may be anonymized and sold without their consent, according to an article at Scientific American.
It reports growing unease about the expanding use of data mining by commercial entities not just among privacy advocates but among health industry insiders as well.
While longitudinal studies can be beneficial by providing new insights into the long-term effects of drugs and treatments, the under-the-radar market for medical data, the lack of patient consent and the ease at which patients can be identified even from anonymized data raises concerns.
The article highlights a dominant data broker in the market, IMS Health, which collects data from three-quarters of all retail pharmacies in the U.S., as well as insurance companies and other medical organizations.
Medical privacy rules do not apply to it and other medical data brokers because the data is designed to be anonymous. It collected data on individual doctors' prescribing habits, and when they complained, took the case all the way to the Supreme Court and won, according to the article.
Harvard researchers have shown that patients can be re-identified with just their Zip code, date of birth and gender, along with other publicly available data such as voter rolls.
Meanwhile, health insurance companies are mining ever more data on their members, including the kind of car they drive and the magazines they read, ostensibly in an effort to keep them healthy.
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- here's the article