In yesterday’s post, we looked at some of the ways members of the PatientsLikeMe community are connecting with other patients and the value they are getting from it. Today, we’ll highlight how one person can make an enormous difference and inspire you with her ability to connect with others. One method of reaching out to… Continue reading One for All: The PatientsLikeMe “Welcome Wagon”
Category: Multiple Sclerosis
One for All: The Connected Community of PatientsLikeMe
PatientsLikeMe is dedicated to building a platform for the open sharing of personal health data. So far, our community of patients have shared over 600,000 outcome surveys, 300,000 treatment histories, and 2.3 million symptom reports. We believe this enormous collection of health data will dramatically improve how patients manage their conditions. But there are more… Continue reading One for All: The Connected Community of PatientsLikeMe
Share and Compare: From the mouths of patients
As we round out our “Share and Compare” week, here are a few quotes that some of our members have shared regarding the impact of being able to see where you fit in. You’ll read in the quotes how patients like you can find solace in the fact that there are others out there experiencing… Continue reading Share and Compare: From the mouths of patients
Share and Compare Your Health Experience
“I want to know if what I’m going through is normal for a patient like me.” This is a sentiment we’ve heard from so many of you throughout our communities. This week, we’re focusing our blog on some of the ways we’re trying to help you put your experiences in context. It’s a concept we… Continue reading Share and Compare Your Health Experience
Share and Compare: How are you feeling? Find out with InstantMe!
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!
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”
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!
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?