Online health community PatientsLikeMe is using a data mining incident that occurred on its patient forum to highlight "transparency, openness and privacy," said the company's president.
PatientsLikeMe reports that last spring one of its forums was "scraped' for data by New York-based media research firm the Nielsen Co.
According to a notice received by all members of the site, the company was alerted to suspicious activity on their Mood community that showed that a user had been looking at too many accounts or profiles within a specified time.
"This user was not a patient, but rather a computer program that scrapes (i.e. reads and stores) forum information," said Co-founder and President Ben Haywood in the letter.
The company is not calling this a security breach, but rather a violation of their User Agreement.
"Your Account Information (e.g. your names and emails) was not in danger of being stolen," Haywood wrote in the letter. "It is likely that the forum information that was 'scraped' would be sold as part of [Nielsen's] Internet monitoring product. In fact, we sell a similar service, PatientsLikeMeListen, to our clients so they better understand the voice of the patient."
Nielsen released a statement on its website saying it "recently became aware that one of our BuzzMetrics legacy data collection practices does not live up to our current standards."
The practice involved the company registering as an individual user on some websites and then collecting publicly available data.
"Today, we do not include data beyond what is freely available to anyone online via search engines or through normal browsing from any website requiring establishment of an individual account for access without first obtaining consent from the website operator," said officials.
"Nielsen is committed to making every effort to fully conform to, if not help set, the industry standard for data use practices. By removing this practice from our collection process, we believe we meet that commitment."
Haywood said on the company's blog that the incident and its coverage by the Wall Street Journal has, "spurred an important ongoing discussion about what is right, just and appropriate regarding how companies operate in this new networked world."
He noted that this is a "new frontier."
"We also believe there's a lot for everyone to learn from this experience, especially around how to put patients first," he said.
