Sharing, Openness…and Privacy?

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.

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This often results in our Privacy Policy and User Agreement being updated to help clarify our goals and objectives.  One of our company’s core values is transparency, which means we never want to surprise you.  Our site wouldn’t be what it is today if we didn’t honor the trust you put in us.  Because of that trust and our values, we want you to understand what our Privacy Policy means for you and make sure it clearly states what we’re doing with your information as a business.

So, what has changed about our Privacy Policy?  Well, the short answer is not much – but if you haven’t read it in a while, it will read differently (and hopefully much clearer).  As you know, we talk very openly about how we encourage our paying customers to partner with our patients (check out our Read This! section) to better serve your needs. The latest changes to the Privacy Policy reflect what we have always intended to do as a business, which we’ve hopefully expressed to you.  In this latest revision, we try to make it clearer by providing examples of what different parts of the policy means.  We give specific examples of real world cases of where and when your data is used and/or sold.

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!

PatientsLikeMe member bheywood

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