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”
Category: Organ Transplants
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!
Drug Safety: It’s About More Than Just Compliance
Engaging in social media presents a number of uncertainties to pharmaceutical companies. In a world where much of the medical dialog has moved online, these uncertainties have emerged due to absent or unclear guidelines from the Federal Drug Administration (FDA), privacy and regulatory concerns about engaging directly with patients, and the potential for significant consequences.… Continue reading Drug Safety: It’s About More Than Just Compliance
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
Extending Boston’s Commitment to Organ Transplantation
Attending the National Kidney Foundation’s 2010 U.S. Transplant Games was an eye-opening experience. And it wasn’t just the thousands of transplant recipients, living donors, and donor families who made the event so memorable. It was the passionate commitment to transplantation by so many different individuals and organizations. Dozens of nonprofits, donor and support groups, and… Continue reading Extending Boston’s Commitment to Organ Transplantation
All Aboard! Bringing PatientsLikeMe to Transplant “Gamers”
www.flickr.com 2010 Transplant Games photoset As you may know from reading Molly’s post last week, a few of us from the PatientsLikeMe staff recently attended the National Kidney Foundation’s 2010 U.S. Transplant Games in Madison, WI. In addition to supporting some of our current nonprofit and industry partners, PatientsLikeMe was an exhibitor at this year’s… Continue reading All Aboard! Bringing PatientsLikeMe to Transplant “Gamers”
PatientsLikeMe Gets into the Spirit of the Transplant Games
The spirit of Team Mid New England and the U.S. Transplant Games has infiltrated PatientsLikeMe! We have just gotten back from an amazing trip to Madison, WI to watch Team Mid New England take to the athletic fields and to spread the word about our transplants community at PatientsLikeMe. We had the opportunity to sponsor… Continue reading PatientsLikeMe Gets into the Spirit of the Transplant Games
U.S. Transplants Games – Here We Come!
A few weeks back, we were delighted to join the National Kidney Foundation of New England at their Transplant Games Team Meeting to give a demonstration of the PatientsLikeMe Transplants Community. Later this week, we’ll be joining Team Mid-New England as their official t-shirt sponsor as they “take the field” for the U.S. Transplants Games… Continue reading U.S. Transplants Games – Here We Come!