14 posts from July, 2011

Let Patients Help: The Undying Mission of E-Patient Dave

Posted July 18th, 2011 by

“Patients know what patients want to know.”
Dave deBronkart

Bloggerauthor and international keynote speaker Dave deBronkart is a familiar name at PatientsLikeMe, as his writings and health talks tend to strike a chord with us.

You see, “E-Patient Dave,” as he calls himself, has a story that underscores exactly why we founded PatientsLikeMe. After being diagnosed with Stage IV kidney cancer, Dave faced a grave prognosis. He read that the median survival for his condition was just 24 weeks from diagnosis. Then he joined a social network for cancer patients and learned of a treatment called interleukin-2 that most patients never hear about. Happily, this treatment would eventually save his life.

Today, E-Patient Dave is a healthy fellow as well as an outspoken advocate for many things we support. For example, he believes patients are “the most underutilized resource in healthcare,” and that patients should have access to their own medical data. He argues that only with complete data can a patient crack the code on his or her own health situation. As co-sponsors of the Declaration of Health Data Rights in 2009 and proponents of our own unique Openness Philosophy, we wholeheartedly agree.

To learn more about Dave’s remarkable story, as well as his plea to the medical world to “let patients help,” check out his recent TEDx Talk below.  (If you’ve never heard of TED or TEDMED, it’s another concept we support because of how it generates ideas and stories that produce “wow” another core value of our company.  Our Co-Founder Jamie Heywood has even appeared on their stage for his own TEDMED talk.)

Finally, here is a powerful anecdote from E-Patient Dave about how other patients continued to help him throughout treatment.  “The side effects of interleukin-2 are, as the American Cancer Society puts it, ‘often severe and rarely fatal,'” he says.   “That statement left me pretty powerless, so I collected 15 firsthand stories from my patient peers who had the treatment.  And when my side effects hit the first was uncontrollable chills and shaking I knew what is was.  I knew what to expect, and I knew how other patients like me had gotten through it.”


Photo of the Day: A Glimpse of PatientsLikeMeInMotion

Posted July 15th, 2011 by

As we mentioned in our blog post last week, our PatientsLikeMeInMotion program is off to a running start this year with more than 30 sponsored teams thus far. What does one of these run/walk/bike teams look like? Below is Team Sylvan, a 40-person team led by ALS patient Panda155.

Team Sylvan, Sponsored by PatientsLikeMeInMotion

Decked out in bright blue PatientsLikeMe t-shirts, Team Sylvan took to the streets for the ALSTDI Cure Is Coming Walk, held on May 7, 2011, in Lexington, Massachusetts. This is the third year that they’ve been sponsored by PatientsLikeMeInMotion, which makes them one of our veteran superstar teams.

Congrats to Team Sylvan and all of our sponsored teams for your efforts to raise funds and awareness for your condition. We’re honored to support you every step of the way.  For more inspiring PatientsLikeMeInMotion team photos, check out our new Flickr slideshow.

Organizing a team for this fall?  Sign up for PatientsLikeMeInMotion today.