The Value of Openness: The PatientsLikeMe Blog

PatientsLikeMe was recently one of the sponsors for the 2008 MS Challenge Walk on Cape Cod, a three-day, 50-mile event held on September 5-7, 2008. More than 620 walkers participated, each raising a minimum of $1,500.  Overall the event raised close to $1.4 million to benefit Multiple Sclerosis (MS) education, support, advocacy and research.

The walkers persevered through some very nasty weather during parts of the walk.  Fortunately, the last day was a spectacular early Fall day in New England, as the event ended with the parade of walkers onto the Hyannis common.

We had the chance to talk to  many participants over the course of the three days, and showed them how PatientsLikeMe can help them share their health data and experiences and learn from others. We showed them a public member’s profile to demonstrate how they could use enter treatments, symptoms and outcomes and chart the course of their disease over time.  They were also very excited to see how this information is aggregated in our Treatment Reports.  Whether they wanted to share their positive experiences with a specific treatment, or were looking for more information about a newly considered treatment, walkers definitely saw great value in our treatment report/evaluation system.

This event is also where our MS quilt made its public debut.  The quilt, made up of individual squares created by many of our charter MS members, brings home the support aspects of the site.   It highlights some of the people who have helped create and grow the site into one of the largest and most vibrant MS communities online today, with more than 7,600 members from around the world.  The process of actually creating the quilt also represents what PatientsLikeMe is about:  pulling together patients’ experiences and data in a way that allows both the individual and comprehensive view of the disease.

This was an inspirational event. It was rewarding to learn first-hand from people about the challenges they face dealing with MS, and to offer them a resource where they can find and learn from others going through similar challenges.

This entry was posted on September 19, 2008 at 10:43 am and is filed under Conferences/Events, Multiple Sclerosis. Tagged: health data, health social networking, MS Challenge Walk, multiple sclerosis, outcomes, patients, Patients Like Me, PatientsLikeMe, symptoms, treatments. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.