“I’ve met a lot of people from all over the world, we are all one happy family.” – Vigwig Around and around we go, strap on in for Episode 3 of our podcast series, “The Patient Voice.” To continue with the PatientsLikeMe Parkinson’s Disease (PD) quilt story, our guest today is community member VigWig. A… Continue reading The Patient Voice | Episode 3: When a Community “Becomes Family”
Category: Parkinson’s Disease
The Patient Voice | Episode 2: The Warmth Of A Quilt
“When I saw the quilt, I was like, ‘Oh my gosh! It’s beautiful!’…I felt like I was visiting with all of these other people.” – BrownCat87 Wrap yourself up with the PatientsLikeMe Parkinson’s Disease quilt and Episode 2 of “The Patient Voice” podcast series. In our first episode, we heard from PokieToo, creator of the… Continue reading The Patient Voice | Episode 2: The Warmth Of A Quilt
PatientsLikeMe in Wall Street Journal: Transparency, Openness and Privacy (cont’d)
Journalist Julia Angwin of the Wall Street Journal just published an article describing how a major media monitoring company, Nielsen BuzzMetrics, scraped our forum last Spring. (See my previous blog post on the incident – “Transparency, Openness and Privacy”) Julia’s piece includes details regarding how this incident happened, how we (and you) responded and more. … Continue reading PatientsLikeMe in Wall Street Journal: Transparency, Openness and Privacy (cont’d)
Series Premiere of “The Patient Voice” – Meet Pokie Too!
“This represents my family, we share everything together.” – PokieToo, PatientsLikeMe Parkinson’s Community “The Patient Voice” is here! Are you ready to listen in? Today is the official premiere of our new PatientsLikeMeOnCallTM podcast, “The Patient Voice.” Our first guest is Parkinson’s community member, PokieToo. Pokie is the founder and creator of the PatientsLikeMe Parkinson’s… Continue reading Series Premiere of “The Patient Voice” – Meet Pokie Too!
New Podcast Series: “The Patient Voice” Premieres This Thursday
On Thursday October 7, 2010, the PatientsLikeMeOnCall TM podcast is proud to present a new series called “The Patient Voice.” Through these podcasts, you’ll hear emotional and inspiring stories from our community members that demonstrate the type of sharing and positive connections being made by patients on our site and how these connections are affecting… Continue reading New Podcast Series: “The Patient Voice” Premieres This Thursday
Will Openness Bring About a Breakthrough?
Share your thoughts in an innovative online event with our partner Myelin Repair Foundation. Our Openness Philosophy is centered around the idea that patients sharing their real world health data allows for collaboration on a global scale; that it will accelerate new treatments; and that it can change our health care system. In this same… Continue reading Will Openness Bring About a Breakthrough?
Flickr-ing PatientsLikeMeInMotionTM
Ever wonder what your fellow members were up to on their sponsored walks and runs in various states across the country? Last week, PatientsLikeMe launched a Flickr page for the PatientsLikeMeInMotionTM program. Now you can see photos of members just like you in motion! We are excited to share the experience of sponsored teams and… Continue reading Flickr-ing PatientsLikeMeInMotionTM
It’s Official: Sharing Health Data Improves Outcomes
(Listen here to the PatientsLikeMeOnCallTM podcast on this topic) Last week the PatientsLikeMe R&D team published a study entitled “Sharing Health Data for Better Outcomes on PatientsLikeMe” in the Journal of Medical Internet Research (JMIR), the leading open access peer-reviewed journal on health care in the Internet age. The study aimed to find out direct… Continue reading It’s Official: Sharing Health Data Improves Outcomes
Know Thy Self – Measuring Your Quality of Life
Last Fall, PatientsLikeMe introduced our Quality of Life (QoL) tool which is displayed on the profiles of members in the HIV community. By answering a few questions, patients can see how HIV is impacting them – physically, socially and mentally. Today, this same QoL measure is used by thousands of patients across the HIV community… Continue reading Know Thy Self – Measuring Your Quality of Life
PatientsLikeMeInMotion at 2010 Parkinson’s Unity Walk
Last weekend, we headed to New York City in great anticipation of the 2010 Parkinson’s Unity Walk held each year in Central Park. We were excited once again to meet members of Team PatientsLikeMe, a group of patients who travel from across the country to meet one another and work tirelessly to raise money each… Continue reading PatientsLikeMeInMotion at 2010 Parkinson’s Unity Walk