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 […]
Flickr-ing PatientsLikeMeInMotionTM Read More »
“We the people…have the right to our own health data.” That’s part of a collective new Declaration of Health Rights, officially unveiled tonight on the newly launched HealthDataRights.org. It is time to turn the conversation from fear and privacy to sharing data and finding new treatments and better care. The Declaration represents reality that what
Patients like me declare our health data rights Read More »
We do not live our lives alone. We live our lives in collaboration with others. We communicate our needs and our goals, and together we work to achieve them. This is exceptionally true for families and individuals dealing with illness. Whether you’re dealing with depression, or pain, or perhaps the fear and stigma of HIV,
Sharing Is A Right As Well Read More »
Today’s patient has a loud and strong voice. At PatientsLikeMe, we hear you. You’re saying, “I know this disease, I know how it acts in the real-world, and it’s time to share that with others.” With thousands of patients sharing data and experiences every day on our site, we’ve decided to launch a report that
Introducing “The Patient Voice” – First up? Inpatient Therapy Read More »
Did you know that yesterday was Fibromyalgia Awareness Day? The PatientsLikeMe Fibromyalgia community is growing exponentially with more than 3400+ members just five months after its launch! Many of our members are feeling newly empowered by their membership in our community and are attending events, wearing pins and ribbons and taking the time to spread
Fibromyalgia Awareness Day 2009 Read More »
Sharing. It’s a concept we all learn at a very young age. Oftentimes reminisced as happening in the sandbox, we think back to our young selves giving up what we hold most dear (in this case, some cheap plastic toy) to allow someone else to benefit from it. It seems so simple and obvious, but
Sharing to Feel Better Read More »
13.1 grueling miles. A half marathon. Running that distance for anyone is a challenge that takes months of training and dedication. Imagine running that distance having fibromyalgia. My close friend and PatientsLikeMe member, Minnie Lee, has fibromyalgia and courageously ran in the Surf City Half Marathon last Sunday. This wasn’t even her first time running
Patients Like Me Can Run 13.1 Miles With Fibromyalgia Read More »
As we end the year, we give you the last 2008 video from PatientsLikeMe and the first of our new fibromyalgia community. We asked this newly launched community to tell us “How are you overcoming fibromyalgia?” This is what they had to say: Thanks to all of you who contributed your “voice” to this video.
Voices of Fibromyalgia: Patient Video Read More »
PatientsLikeMe members share health data on the site adding their own individual-level health experience to a repository of structured outcome data. The result? An unprecedented data set that informs medical conversation not only within the patient community but also with the larger scientific one. Earlier this fall, the venue for this conversation was the annual
Structuring and Presenting the Patients’ Perspective at AMIA Read More »
A few nights ago, I was honored to give a keynote at the second Health 2.0 Northeast conference held right here in our Cambridge, MA backyard. It’s exciting to see old friends and new emerging start-ups coming together to try and make a dent in the $2 trillion industry that is healthcare in the U.S.
Health 2.0: Where do we go from here? Read More »
