I’ve spoken a few times about the website PatientsLikeMe where individuals share personal stories about their health issues and the treatments they’ve pursued. I think this website is interesting on a number of levels, but mainly because it’s taking on the wisdom of crowds in order to achieve better health treatment( a place where in most cases it’s a top down directive from doctors). At first glance you could compare PatientsLikeMe to WebMD and say what’s the difference, but PatientsLikeMe is focused more on the human condition rather than the science, and as a result has created a growing, tightly, knit group of users. To me it reinforces the immense value that storytelling and the human condition can play in problem solving(in addition to the science), and I’m not the only one who sees it that way.
I ran across this article in WSJ this weekend;
“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. 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”
The article is a short but interesting read and gets into deeper detail on the concept of data scraping but what I think is truly revealing about it is that people are willing to share deep personal stories, without necessarily understanding the immense value that they hold. Neilsen isn’t running research sessions and talking with individuals; it already knows that the data is immensely valuable and have already taken the steps to make that acquisition process more efficient by automating it. They’ve recognized that people are willing to share those deep personal stories, and have created a workflow to capitalize on it. There is a large conversation to be held around the ethics of what PatientsLikeMe and Neilsen are doing with that data, but there activities reiterate the idea of personal stories/data as capital which I think is fascinating. It’s a new economy which is starting, and those who are the first to understand the implications of it will be ones who excel in it.