4 posts from November, 2009

Bil:Pil Conference Presentation on PatientsLikeMe

Posted November 24th, 2009 by

A few weeks ago, I gave a 30-minute talk about PatientsLikeMe at Bil:Pil, the unconference following TEDMED in San Diego (where Jamie Heywood made an amazing presentation, by the way). The topic of my presentation was “A Healthy Mix with an Economic Twist.” I focused on how difficult it can be to make money in the Health 2.0 space because companies must balance patient needs with commercial reality to keep the doors open.

Central to that discussion for PatientsLikeMe are our core values. As I’ve discussed many times before, it is our imperative to keep patients first in all of our endeavors, including building the revenue base for the company, because we must honor the trust patients give us in sharing their deep health information.

There was a mini-flurry of Twitter activity during the talk as well. Check out some of the thoughts from leaders in the space to the right.

What do you think? Video from Bil:Pil will be available in the coming weeks. Kudos to Jonathan Sheffi and team for organizing a great unconference!

PatientsLikeMe member dwilliams


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


Redesigned Treatment Reports on PatientsLikeMe

Posted November 9th, 2009 by

One thing that’s great about working at PatientsLikeMe is that our members are really invested in making our product better. Every day, we receive lots of great recommendations about how to improve the site.   Today, we’re unveiling newly redesigned treatment reports that incorporate feedback we’ve received in all our communities.  Want to know what medications patients like you are using to treat their condition and compare your experiences with others?  That’s what you can do with a treatment report.   In redesigning these reports, we wanted to make them more useful, more visible and easier to navigate.  Now you can:

  • Understand the experience of taking a treatment, including what the side-effects are and how people manage those side-effects
  • Learn how to cope with taking a drug (with tips and advice from other members and links to relevant forum threads)
  • Find and contact other patients like you who use a certain treatment (such as people who report the same side effects or people who take it for the same reason)
  • See how your experiences compare to those of other patients like you

If you’d like a tour of these new reports, check out the screencast below by our web developer Adam Darowski.  We’ll continue to update you through the forum, our newsletters and the blog on what’s new and improved on the site.  Your feedback helps us to continue to fulfill our promise of delivering a website that helps you and makes you say “wow.”  Please, keep it coming…

PatientsLikeMe member moakes


Research Award: Patients Informing Practice

Posted November 5th, 2009 by

Earlier this Fall at Medicine 2.0, PatientsLikeMe was honored to receive the inaugural Journal of Medical Internet Research (JMIR) Award for our paper on what we can learn about drugs post market from patients reporting treatment experiences on PatientsLikeMe.

Once a drug is on the market, it can be difficult to evaluate how it’s working in the real world for different kinds of people using it for different purposes. In this paper, our research team examined how we can learn from collecting the experiences from individual members scattered around the world into a single database. The study focused on Amitriptyline, a medication used widely and for a variety of purposes, and reports on why patients take it, the efficacy of the drug, its side-effects and associated burden.

To see patients’ real world experiences with a specific treatment, like Amitriptyline, you can browse the thousands of treatment reports shared on PatientsLikeMe.  You can also view a summary of our Medicine 2.0 presentation here or below to learn more about this study.  The full paper will be published in 2010, so stay tuned!

PatientsLikeMe member jfrost