In response to the Wall Street Journal article published last week, we've had a lot of great discussions about the role of honesty and transparency. Transparency is about you - members of the PatientsLikeMe community - knowing how we make money and what we do with the data you've entrusted to each other and PatientsLikeMe.
To continue the dialogue, we're writing this blog to respond to a few recent articles that have suggested we do something other than what we've said. See BNET's "PatientsLikeMe Is More Villain Than Victim in Patient Data 'Scraping' Scandal" and Internet Evolution's "Personal Data Mining: Government & Business Share Blame" (since corrected).
To start, the characterization as villain is nicely hyperbolic for a headline, but inaccurate. Villains are dishonest. As a company, we strive to be honest and transparent - both are key parts of our Core Values as an organization. To that end, let us dig in on a few of your recent follow-up questions:
- Does PatientsLikeMe sell our identifying data (like name, photo, bio, etc.)?
No. We've asked for a correction in the Internet Evolution article because their statement about scraping the names you use to sign up for the site is incorrect. In the BNET article, the author cited our Privacy Policy, which indicates what data patient members can share on their health profiles at PatientsLikeMe. This is not the same as the data we sell. In addition to linking our partners site right off our homepage (where we list out the products sold to partners), we also call out "how we make money" on the front page. Part of this FAQ was cited, but the very important point about "personally identifiable information" is below:- How does PatientsLikeMe make money? We take the information patients share about their experience with the disease, and sell it in a de-identified, aggregated and individual format to our partners (i.e., companies that are developing or selling products to patients). These products may include drugs, devices, equipment, insurance, and medical services. We do not rent, sell or share personally identifiable information for marketing purposes or without explicit consent. Because we believe in transparency, we tell our members exactly what we do and do not do with their data. (Read more)
- Is this a "privacy scandal"? To us, it's not a discussion about whether or not health information should be private. (Don't get us wrong - that's an important discussion too, but we're pretty clear on where we stand on that - see our Openness Philosophy). The issue here is that Nielsen was not given consent of the patients, nor PatientsLikeMe, to scrape information from our site. As we've said before, we believe this scraping incident was a violation of our User Agreement and a violation of patients' trust.
- Isn't PatientsLikeMe doing the same thing as Nielsen? In addition to our User Agreement and Privacy Policy, we also have a moral obligation to our communities to do the right thing. In this case it means: 1) having this dialogue openly and honestly; 2) being selective about the projects we work on and our partners; and 3) contractually obligating our partners not to 're-identify' our patients with our data or other data (which would mean a pharma company would be taking on liability using a service like PeekYou in conjunction with PatientsLikeMe data).
Our site wouldn't exist if we had to "persuade" you, the patient, to share your data. Many of you find value in sharing; value in that level of openness. What you should expect in return is a level of transparency about what we will and won't do with your information. We hope we do a good job of providing that transparency. What do you think?