“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
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 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?
Success is Putting Patients First
Without looking too far forward I think we all can see a day where patients have the ability to see how different decisions they make directly impact their health outcomes. I don’t mean in an abstract sense, but rather in a practical way that can change day-to-day decisions about nutrition, exercise, medication choices, and doctor… Continue reading Success is Putting Patients First
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”
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 event. Our goal was to… Continue reading All Aboard! Bringing PatientsLikeMe to Transplant “Gamers”