17 posts from May, 2011

One for All: How Medical Research Is Changing Right Before Our Eyes

Posted May 27th, 2011 by

“I think what’s really exciting is the scale we’re operating under.  My PhD was conducted with 80 patients.  Last week, I got survey responses from 4,000 patients in a week.  That is unparalleled power in the research world.” – Paul Wicks, PhD

This week marks the third installment of our latest video series, which explores what the recent changes at PatientsLikeMe mean for you as well as the entire medical establishment.  (Missed the first two installments?  Catch up on what PatientsLikeMe executives Ben Heywood and David S. Williams III had to say.)

In today’s video, PatientsLikeMe R&D Director Paul Wicks shares his thoughts on how the increased scale of PatientsLikeMe will impact not only the types of patient tools we develop moving forward but also the way medical research is conducted.  Tune in to hear some highlights of how PatientsLikeMe research efforts are already helping patients and researchers better understand what causes certain diseases.

Stay tuned for the fourth and final installment of our video series next week.  To keep up with all PatientsLikeMe videos, subscribe to our YouTube channel today.

Patient Sharing: A Concept That Is Finally Becoming Obvious

Posted May 26th, 2011 by

Susannah Fox, Associate Director of the Pew Internet & American Life Project

Susannah Fox, the Associate Director of the Pew Internet & American Life Project, recently posted a blog entry entitled “Peer-to-peer Healthcare: Crazy. Crazy. Crazy. Obvious.” that is near and dear to our hearts here at PatientsLikeMe.

In her post, she defines peer-to-peer healthcare as follows:

“Patients and caregivers know things — about themselves, about each other, about treatments — and they want to share what they know to help other people.  Technology helps to surface and organize that knowledge to make it useful for as many people as possible.”

Sound familiar?  She goes on to describe where this idea of patients sharing knowledge with each other fits in the lifecycle of ideas (or The Natural History of a New Idea).

All of this research is moving peer-to-peer healthcare along the new idea scale.  In fact, I’m having fun watching people’s reactions (and mine) when I describe these new studies:  from indifference (bummer, they don’t get it), to puzzlement (OK, we’re at least up to ‘odd, but unproven’), to excitement (oh good, let’s talk). It speaks volumes to me that the Wall Street Journal covered the PatientsLikeMe [ALS] study, for example, and other major news outlets did not.”

Want to hear why she thinks PatientsLikeMe and others are moving the concept of patient sharing from “crazy to obvious” – and how this all could affect the future of science?  Read her full blog post and weigh in with your own thoughts in the comments section.

PatientsLikeMe member lscanlon