PatientsLikeMe incident may just be 'scraping' the surface

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Ready for another threat to individual privacy? Less insidious, perhaps, than phishing, but potentially as damaging is a relatively new technique called "scraping."

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Scraping is the practice of trolling social networking sites, message boards and chat rooms looking for personal information that can help firms target the right people with their marketing efforts. And instead of being cloaked in the guise of a Nigerian prince or other shady character, scraping is being sponsored by some big-name, legitimate companies, and it's starting to find its way into healthcare.

The Wall Street Journal reported last week that media research firm Nielsen Co.--you know, of TV viewership ratings fame--was caught copying messages off the message boards of consumer healthcare support site PatientsLikeMe. PatientsLikeMe identified and blocked Nielsen from its site and sent notices to registered users, but the damage had been done.

According to the Journal, a 33-year old Australian used PatientsLikeMe under a pseudonym to discuss depression with others suffering from the same condition, but his profile--listing all of his medications, too--linked to a public blog containing his real name, Bilal Ahmed. "I felt totally violated," Ahmed told the Journal. "It was very disturbing to know that your information is being sold."

Nielsen reportedly has stopped scraping sites that require users to register, unless it first obtains permission. But the horse may already be out of the barn for untold PatientsLikeMe users. I wonder how many other companies out there are just discovering scraping. I also wonder if Nielsen wouldn't still be pulling down supposedly confidential information if it hadn't have been caught in the act.

What the Journal didn't address is whether HIPAA privacy protections apply to such marketing activities, or if HIPAA even matters when you're dealing with a non-U.S. resident like Ahmad.

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Welcome to the digital age, where well-meaning marketers and not-so-well-meaning criminal elements always seem to be one step ahead of the technology and the law. - Neil

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