Here at PatientsLikeMe we strive to give you the tools and functionalities you want and need to gain insights into your conditions, including putting your experiences in context. Today, we’re introducing a new tool in all of our communities called “InstantMe.” Want to chart how you’re feeling day in and day out? Now you can.… Continue reading Share and Compare: How are you feeling? Find out with InstantMe!
Category: Parkinson’s Disease
The Patient Voice | Episode 5: A Little Elbow Grease and a “Can Do” Attitude
I don’t think about what I can’t do,I think about what I can do. – Cher441 Over the past month, we’ve heard several stories about how PatientsLikeMe Parkinson’s Disease community members came together online and made a quilt that has traveled all around the world providing warmth, comfort and a sense of unity for each… Continue reading The Patient Voice | Episode 5: A Little Elbow Grease and a “Can Do” Attitude
The Patient Voice | Episode 4: Weaving An Inheritance
“I’ve had Parkinson’s for 15 years, and I feel like I can help people more by being vocal than I can by being quiet.” -Aunti J Stand up and shout! Episode four of our new podcast series, “The Patient Voice,” is here! For our next interviewee, meet Aunti J. Like many others who contributed to… Continue reading The Patient Voice | Episode 4: Weaving An Inheritance
What Data Do We Sell? A Continued Discussion about “Data Scraping”
In response to the Wall Street Journal article published last week, we’ve had a lot of great discussions about the role of honesty and transparency. Transparency is about you – members of the PatientsLikeMe community – knowing how we make money and what we do with the data you’ve entrusted to each other and PatientsLikeMe.… Continue reading What Data Do We Sell? A Continued Discussion about “Data Scraping”
The Patient Voice | Episode 3: When a Community “Becomes Family”
“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 few… Continue reading The Patient Voice | Episode 3: When a Community “Becomes Family”
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 quilt,… 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 eventwith 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 spirit… Continue reading Will Openness Bring About a Breakthrough?