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”
Tag: Openness
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?
Transparency, Openness and Privacy
The following message was sent this morning to all members of PatientsLikeMe. Please read what we have to say about openness, sharing and its privacy implications and join the conversation. **** Dear PatientsLikeMe Members, What are the privacy implications of sharing in this open, online community? We talk a lot about this and, as a… Continue reading Transparency, Openness and Privacy
Multiple Sclerosis Awareness Week: Interview with Gardener
It’s National Multiple Sclerosis (MS) Awareness Week. There are more than 17,400 patients in the PatientsLikeMe MS community sharing data about their symptoms, treatments and side effects, lifestyle modifications and overall health outcomes. In honor of the week, and March being National MS Awareness Month, we will be posting interviews with MS patients and nonprofit… Continue reading Multiple Sclerosis Awareness Week: Interview with Gardener
Interview with Thomas Goetz
(author of The Decision Tree)
In March 2008, a story by Thomas Goetz appeared in the New York Times magazine about PatientsLikeMe (“Practicing Patients”). Thomas has now expanded on that reporting with a new book, The Decision Tree, that explores how new tools like PatientsLikeMe can help individuals engage in their health and make better, more informed choices. We asked… Continue reading Interview with Thomas Goetz
(author of The Decision Tree)