It was a break-in. A new member of the site, using sophisticated software, was "scraping," or copying, every single message off PatientsLikeMe's private online forums.
PatientsLikeMe managed to block and identify the intruder: Nielsen Co., the privately held New York media-research firm. Nielsen monitors online "buzz" for clients, including major drug makers, which buy data gleaned from the Web to get insight from consumers about their products, Nielsen says.
"I felt totally violated," says Bilal Ahmed, a 33-year-old resident of Sydney, Australia, who used PatientsLikeMe to connect with other people suffering from depression. He used a pseudonym on the message boards, but his PatientsLikeMe profile linked to his blog, which contains his real name.
After PatientsLikeMe told users about the break-in, Mr. Ahmed deleted all his posts, plus a list of drugs he uses. "It was very disturbing to know that your information is being sold," he says. Nielsen says it no longer scrapes sites requiring an individual account for access, unless it has permission.
Andrew Quilty for The Wall Street Journal.
Bilal Ahmed wrote about his health on a site that was scraped.
The market for personal data about Internet users is booming, and in the vanguard is the practice of "scraping." Firms offer to harvest online conversations and collect personal details from social-networking sites, résumé sites and online forums where people might discuss their lives.
The emerging business of web scraping provides some of the raw material for a rapidly expanding data economy. Marketers spent $7.8 billion on online and offline data in 2009, according to the New York management consulting firm Winterberry Group LLC. Spending on data from online sources is set to more than double, to $840 million in 2012 from $410 million in 2009.
The Wall Street Journal's examination of scraping—a trade that involves personal information as well as many other types of data—is part of the newspaper's investigation into the business of tracking people's activities online and selling details about their behavior and personal interests.
Some companies collect personal information for detailed background reports on individuals, such as email addresses, cell numbers, photographs and posts on social-network sites.
Others offer what are known as listening services, which monitor in real time hundreds or thousands of news sources, blogs and websites to see what people are saying about specific products or topics.
Chris Detrick for The Wall Street Journal
Some of the computer code behind screen-scraper.com's software.
One such service is offered by Dow Jones & Co., publisher of the Journal. Dow Jones collects data from the Web—which may include personal information contained in news articles and blog postings—that help corporate clients monitor how they are portrayed. It says it doesn't gather information from password-protected parts of sites.
The competition for data is fierce. PatientsLikeMe also sells data about its users. PatientsLikeMe says the data it sells is anonymized, no names attached.
Nielsen spokesman Matt Anchin says the company's reports to its clients include publicly available information.
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