This month, after the Nielsen/PatientsLikeMe.com story broke in the WSJ, several of the market research forums and LinkedIn groups were abuzz. The best of the lot was led by Tom Anderson of Anderson Analytics and his Next Gen Market Research group.
In case you missed the dustup, here’s an excerpt from the WSJ.com article:
At 1 a.m. on May 7, the website PatientsLikeMe.com noticed suspicious activity on its “Mood” discussion board. There, people exchange highly personal stories about their emotional disorders, ranging from bipolar disease to a desire to cut themselves.
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.
Bilal Ahmed wrote about his health on a site that was scraped.
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.
Coincidentally, the 11/1/10 issue of Newsweek has an article entitled “Privacy is Dead.” The author, a young woman, describes a new “score” created to help employers understanding social media behaviors of potential employees. For this article, she hired a company called ReputationDefender (who works to clean up online reputations, but has a mixed reputation themselves) to see what they could learn about her (a job they usually don’t do). As she said:
Three Silicon Valley engineers, several decades of experience, and access to publically available databases like Spokeo, Facebook, and LinkedIn (no, they didn’t do any hacking) – and voila. Within 30 minutes the company had my Social Security number; in two hours they knew where I lived, my body type, my hometown, and my health status.
As she points out, it’s one thing if employers get this info; another if it’s a credit-card company or data aggregator who is turning around and selling info on you to other companies for a profit. And maybe these companies aren’t talking about what they’re doing; end-clients may not know (or don’t ask) how these companies are so effective in reaching a marketer’s target audience.
The “debate” centers on several factors:
What is “Public”? I think we all believe that if we post something to our own public blog, or to a public LinkedIn or Facebook group, or Twitter, there’s the expectation that people can “take it” for analysis.
The Gray Area. I was never naïve enough to believe that sites weren’t using our information for profit in some way. However, I did assume that there was a gatekeeper in place:
Case 1: Amazon makes recommendations to its own customers based on past shopping and purchasing behaviors. This is a closed system; I know I have a relationship with Amazon.
Case 2: Site A describes its user profile to Advertiser B. Advertiser B says they’d like to reach just those who are, let’s say, unmarried women under the age of 30. Site A says no problem, send over your ad, and using an ad-server engine delivers the ad to just the desired target. (Okay, a lot more complicated than that, but similar to how magazine lists were “rented” in the past.)
The Ugly Underbelly. But what’s going on is often ugly and/or dishonest: lying to join sites to scrap content; changing a privacy policy after someone has signed up to create a loophole for selling what had been private info. Facebook’s privacy issues over the past year is the most well-known example of this right now – and Congress continues to investigate.
Nielsen is a very large and respected media research company. However, this Nielsen case, in my opinion, is just another part of the ugly underbelly – “mindless parasites” that weren’t programmed to consider the ramifications of their methodology. Nielsen joined PatientsLikeMe.com with the intent of eavesdropping, not participating as a member. Not okay – and I respect them less for having done so.
The good companies doing social media (text) analysis will seek permission from a site to analyze its content for a client (who’s likely to be a potential advertiser). You might ask why a company would agree to have their content scraped. It’s simple: It’s another revenue stream.
Setting Some Standards Today.
There are many aspects to this debate and I really urge you to think about what the possible solutions might be. The leading market research organizations around the world, including ESOMAR, are dealing with these topics right now. In the meantime, here are my initial thoughts:
- If a comment was made on a public blog, it can be quoted in a report delivered to a client.
- If a quote was made by a member of a private site, with the permission of the site owner to look at the data, those findings should not be quoted, but can become part of the aggregated analysis.
- Reporting is a greater challenge for qualitative approaches which tend to rely on quotes.
- Finally, Terms of Service will need to evolve so consumers have greater buy-in when they sign up and as policy changes are made. Easy to say and really hard to do.
Clearly this is a topic I’ll continue to watch closely as it impacts marketing research, including qualitative analysis of social media content.
Your thoughts?


