Posted by bheywood | October 11, 2010
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.
Posted by Lori Piscatelli Scanlon | November 18, 2009
Every so often, we sit down to try and make our business objectives clearer to our patient communities. Why? Well, we can’t have a business without you and our communities can’t exist to help patients without a business.
For example, over the last year we have expanded our efforts into understanding drug safety in the real world. This started with the Treatment Evaluations – letting you tell us (and our customers) what is good and what is bad about the treatments you are taking. Next, we piloted (in our MS community) the ability to voluntarily report adverse events directly to the FDA through PatientsLikeMe. Lastly, in conjunction with UCB, we are expanding our efforts to measure drug safety in the Epilepsy community. All of these initiatives are building to a better understanding of how treatments work in the real world – one of our goals here at PatientsLikeMe.
As we’ve said through our site from the start – you control your information and you “may enter as much or as little information as they like.” We just added “and should not enter any information they feel uncomfortable sharing.” This is common sense on any website, but for new members we wanted to make it clearer. The bottom line – the more you share about your real identity online (whether its on PatientsLikeMe or other Internet sites), the better the chance that someone could identify you.
If you haven’t see our Read This! section, please do. It’ll help give you a sense of what we believe the risks and benefits are to sharing information. Openness is at the core of who we are as a company (see our Openness Philosophy). Your openness is improving patients’ lives, accelerating research and helping improve medical care. Thank you for that. If you have any questions or comments, you know where to find us!