What Data Do We Sell? A Continued Discussion about “Data Scraping”

Posted October 21st, 2010 by

ThiefIn 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?

PatientsLikeMe member bheywood PatientsLikeMe member jamie


8 Comments

  1. Hey, guys!

    I really value your level of openess–not just on this issue, but always. I’m the type of person who actually reads privacy policies and terms of service (geek alert!).

    While I can’t remember the specifics of the privacy policy or TOS, I remember being impressed with their tone. It was obvious to me then that the info I shared here would be shared elsewhere without identifiers.

    I am here TO share–with other patients, with researchers, with pharma companies so they develop better products. If that means I risk one of these somehow rematching my data with my info, it’s still worth it for me so long as I’m helping advance treatments for FM.

    (Of course, I speak only for myself.)

    Annie

  2. Wow. I have just read about the scraping incident here and at the WSJ.

    I can’t remember if I was aware that you sold information or not. While I believe that you strip data of identifying information, I was not aware that you sold such info to pharmaceutical companies.

    I took another look at the User Agreement and found this:

    “Site for Non-Commercial Use Only

    The Site content, including the Member Area and the content and information contained in the Member Area, is for the personal use of individual members only and may not be used in connection with any commercial endeavors.

    Organizations, companies, and/or businesses may not become members and should not use the Site without express consent from PatientsLikeMe. Members of PatientsLikeMe with individual commercial interests may not solicit or overtly promote their products or services within the Member Area. All content shared within the site is not for external use. To garner permission and access to members, please direct all media and analyst inquiries to mediarelations@patientslikeme.com and all research requests to research@patientslikeme.com. Representatives from life sciences and insurance companies are prohibited from creating profiles in our communities. Please direct inquiries to support@patientslikeme.com.”

    ISN’T SELLING MEMBERS INFO A COMMERCIAL ENDEAVOR?! You state that the info shared within the site is “not for external use.”

    I am fairly careful about what I reveal online. Obviously I misjudged the privacy policy on your site as well as your purpose for asking so many questions. You aren’t helping people track their symptoms. You are providing pharmaceutical companies with health info they can’t get any other way.

    I will be deleting my account and I will link to the WSJ article on Facebook. Thankfully I am more careful on more public sites about what I post.

  3. Hi funnyhaha,

    Thanks for your comments. While we never want to see anyone cancel their accounts, we do want all of our members to be aware, and comfortable, with our business model. We’re very open about it. If you look on the front page of PatientsLikeMe.com, you’ll see we have a link right there to “How we make money?” We also write about it on our About Us page, here on the blog, in the forum, via our newsletters and more. I’m sorry you feel that wasn’t explicit enough, but we do our best to be as transparent and open as possible.

    To clarify, the header you cited (“Site for Non-Commercial Use Only”) in the User Agreement (otherwise known on website’s as “Terms of Use”) is designed to tell members what of their actions are and are not allowed within the site. The text in our agreement regarding non-commercial use is there to indicate to members signing up that we do not allow their solicitation of other members nor do we allow their use of the content within the site for commercial use.

    We do work with pharmaceutical companies, but what we share with them is de-identified information about your experiences with your condition. We believe by partnering with the right companies, we can help them learn as much from us as possible in order to improve the products/services they provide to help patients like you.

    Again, we thank you for your comments. If you have any follow-up questions, feel free to let me know.

    Ben Heywood
    Co-founder, President
    PatientsLikeMe

  4. […] tell you in their privacy policy, they do just that (minus the gold coins), they just try to do it transparently and responsibly. PLM just got snippy when Nielsen figured out they could log in under fake accounts to do the same […]

  5. I am happy to know my data might be of any use for research, and I hope to find some other patients like me who I can interchange some information about meningioma and epilepsy. I think that you are doing a fine job here.

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