11 posts from September, 2012

Today’s Photo: 2012 Ride for Dads in Minnesota

Posted September 28th, 2012 by

Earlier this month, we shared a video interview with PatientsLikeMe member Wayne Sticha, who founded the Ride for Dads in 2010 to raise awareness of prostate cancer.

Since September is National Prostate Cancer Awareness Month, we wanted to close out the month by sharing one of Wayne’s photos from 2012 Ride for Dads, which involved approximately 70 motorcycles, made five stops throughout Minnesota and generated $1,100 for the Prostate Cancer Foundation this summer.  PatientsLikeMe was proud to support this community event with a monetary donation and bright blue PatientsLikeMe t-shirts as part of our PatientsLikeMeInMotion program.

Wayne and Team in Their PatientsLikeMeInMotion T-Shirts

Congrats to Wayne and all of our PatientsLikeMeInMotion-sponsored teams for your efforts to raise funds and awareness for your condition. For more PatientsLikeMeInMotion team photos, check out our growing Flickr collection.

Thinking about organizing a team – or even founding an event like Wayne did?  Learn more about the PatientsLikeMeInMotion program today.


PatientsLikeMe at Medicine 2.0

Posted September 26th, 2012 by

With more than 500 attendees from 36 countries, the 5th Annual Medicine 2.0 World Congress took place September 15-16th at Harvard Medical School here in Boston.  Among these attendees were several PatientsLikeMe leaders, including keynote speaker Jamie Heywood and conference presenters Sally Okun and Paul Wicks.

The 5th Annual Medicine 2.0 Congress Took Place in Our Home City of Boston

In an unusual twist, all three PatientsLikeMe speakers got to present back-to-back, starting with Co-Founder and Chairman Jamie Heywood’s opening keynote about how his brother Stephen’s experience with ALS shaped his understanding of basic concepts like health, well-being and disease.  He then shared how PatientsLikeMe was founded to help patients like Stephen record and share their symptom and treatment data in a way that is meaningful to them, other patients and researchers. “Human networks are connecting information and data in ways that have never before existed,” he told the crowd.

Next to speak was Dr. Paul Wicks, our Research & Development Director, who gave a presentation entitled “But Will It Scale?  Lessons in Growth from PatientsLikeMe.”  He discussed how PatientsLikeMe evolved from a data-sharing platform for patients with a single disease – ALS – to a general platform serving more than 160,000 patients with more than 1,300 health conditions and a myriad of symptoms.   Important lessons covered included streamlining the research processes, refining the medical ontology and adjusting the business model.

Finally, PatientsLikeMe Health Data Integrity Manager Sally Okun – whose talk was entitled “Patient Voices:  The Power of Shared Knowledge” – then looked at some of the challenges of turning individual stories into shared knowledge.  One of the biggest hurdles:  how do you capture the patient experience in clinical terms, given that patients don’t speak this way?  For example, instead of talking about a “gait disturbance,” patients might report that they are stumbling, limping, dragging a foot or “walking like a drunk.”  (In fact, Sally shared that PatientsLikeMe members have used 35 different terms for this one clinical concept.)

What was the reaction to this trio of talks?  Sally reports, “I think the juxtaposition of Jamie, Paul and me speaking was quite effective.  Our commitment to capturing and honoring the patient voice certainly resonated with the people I spoke with.” Another way to gauge the response – and certainly an apropos one given the conference’s focus on social media – is to examine the Twitter activity generated by these presentations. Here are a few of the 7,000+ (!) Tweets associated with the conference hashtag #med2 that gave shout outs to PatientsLikeMe:

Click Here to See Cassie's Very Cool Sketch!

A Quote From Jamie Heywood's Keynote Address

Sally Okun's Poem Resonated with Susannah Fox and Others

This Quote in Jamie's Talk Got a Lot of Attention

We Like These Big Important Questions About PatientsLikeMe!