PatientsLikeMe for Partners Blog

PatientsLikeMe in Wall Street Journal: Transparency, Openness and Privacy (cont’d)

Journalist Julia Angwin of the Wall Street Journal just published an article describing how a major media monitoring company, Nielsen BuzzMetrics,  scraped our forum last Spring.  (See my previous blog post on the incident – “Transparency, Openness and Privacy”)

Julia’s piece includes details regarding how this incident happened, how we (and you) responded and more.  We are very excited about this article.  Having a rigorous debate about transparency, openness and privacy is critical to us achieving the trust we want to have with you, our patients.

What Nielsen did was clearly a violation of our User Agreement.  However, we believe this incident (and this article) have spurred an important ongoing discussion about what is right, just and appropriate regarding how companies operate in this new networked world.  As I said to Julia, 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.

Read Julia’s piece and tell us what you think.

PatientsLikeMe member bheywood

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