5 posts tagged “transparency”

Transparency, Openness and Privacy

Posted May 20th, 2010 by

The following message was sent this morning to all members of PatientsLikeMe.  Please read what we have to say about openness, sharing and its privacy implications and join the conversation.

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Dear PatientsLikeMe Members,

What are the privacy implications of sharing in this open, online community?  We talk a lot about this and, as a company, strive to be transparent about the risks and rewards to sharing here.  Two recent events have prompted me to reach out to all the members of PatientsLikeMe to ensure we all understand openness, sharing and its privacy implications.

The first event happened last month when a patient asked us to remove all the data on his/her profile from the system.  The member wrote:

“The reason I’m leaving is I feel I didn’t fully understand the privacy impact of having all my health information for practically anyone in the world to see.”

We rarely receive a request like this, but since receiving this one, I have thought about it every day.   We do not want anyone to be surprised by the impact of sharing data on PatientsLikeMe.  We believe in openness, but we also want people to knowingly make the choice to be open with their health information.

This brings me to the second event.  Recently, we suspended a user who registered as a patient in the Mood community.  This user was not a patient, but rather a computer program that scrapes (i.e. reads and stores) forum information.  Our system, which alerts us when an account has looked at too many posts or too many patient profiles within a specified time interval, detected the user.  We have verified the account was linked to a major media monitoring company, and we have since sent a cease and desist letter to its executives.

While this was not a security breach, it was a clear violation of our User Agreement (which expressly forbids this type of activity) and, more significantly, a violation of the community’s trust.  Your Account Information (e.g. your names and emails) was NOT in danger of being stolen.  It is likely that the forum information that was “scraped” would be sold as part of that company’s Internet monitoring product.  In fact, we sell a similar service, PatientsLikeMeListenTM, to our clients so they better understand the voice of the patient.

What does this all mean to you?  What can you do?

  1. We recognize that people write very personal things in the forum and often use real names.  In any growing network of tens of thousands of members, there is no way to ensure that information you share in the forum or on your profiles will not be read by others.  Know that the information you enter in our system is shared (unless we tell you it is private, like full name and email in your Account Information).  It can and will be read by other patients, the PatientsLikeMe team, researchers, and others that use PatientsLikeMe, including our partners with whom we share de-identified data.
  2. Please weigh the benefits of sharing and the amazing value you all create in helping each other versus the risks of people, unknown to you, reading your posts.  Your input helps PatientsLikeMe and our partners learn about your disease and make better products to meet your needs.
  3. Learn and understand why we value openness.  If you haven’t, please read the Read This! FAQ.  If you want to know how we make money, you can take a look at this FAQ or go to our Partners Page and know that we sell your data and insights (but not your identity) to our customers.
  4. Consider the value of being part of the PatientsLikeMe community and make the right risk decisions for yourself.  Together, we can really change the way diseases are treated and managed by putting you, the patients, in the center of healthcare.  We can hold companies accountable for the strengths and weaknesses of their products and also help make those products better – but that requires openness and that is your choice.

We welcome your comments and questions and we love feedback. This has been posted on our blog, which is a good place to dialogue, as is the forum.

On behalf of the entire PatientsLikeMe team, I want to thank you for being part of our communities and sharing your experiences.

Sincerely,
Ben Heywood
President and Co-founder, PatientsLikeMe

PatientsLikeMe member bheywood


Sharing, Openness…and Privacy?

Posted November 18th, 2009 by

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