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)
Category: Rare Diseases
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!
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
It’s Official: Sharing Health Data Improves Outcomes
(Listen here to the PatientsLikeMeOnCallTM podcast on this topic) Last week the PatientsLikeMe R&D team published a study entitled “Sharing Health Data for Better Outcomes on PatientsLikeMe” in the Journal of Medical Internet Research (JMIR), the leading open access peer-reviewed journal on health care in the Internet age. The study aimed to find out direct… Continue reading It’s Official: Sharing Health Data Improves Outcomes
PatientsLikeMe – Out & About and OnCall
The PatientsLikeMe team has been traveling around the globe recently talking about the power of real-world patient data in changing healthcare. You may have heard about our executives at industry conferences, government hearings, or even on TV. Highlights below. Last month, PatientsLikeMe Co-founder and President Ben Heywood was on Fox Business News talking about how… Continue reading PatientsLikeMe – Out & About and OnCall
Celebrating MS Awareness Month:
Interview with Accelerated Cure’s Sara Loud
It’s MS Awareness Month and we’re excited to bring you information from our nonprofit partner, Accelerated Cure Project for MS. We briefly mentioned the Accelerated Cure Repository in our blog interview with Devic’s patient, Gracie. We thought we’d take the opportunity to ask The Accelerated Cure Project for MS a bit more about the repository… Continue reading Celebrating MS Awareness Month:
Interview with Accelerated Cure’s Sara Loud
Where are the Cures?
An interview with Myelin Repair Foundation
PatientsLikeMe partner, Myelin Repair Foundation (MRF), is a nonprofit organization devoted to reducing the time it takes to discover and develop treatments for multiple sclerosis (MS) patients. Recently, the MRF launched a campaign called “Where are the Cures?” – a site dedicated to a greater understanding of the barriers slowing the discovery and development of… Continue reading Where are the Cures?
An interview with Myelin Repair Foundation
FDA’s New Guidance on Patient-Reported Outcomes
We’re big fans of patient-reported outcomes (PROs) here at PatientsLikeMe, defined by the Food & Drug Administration (FDA) as: “A measurement based on a report that comes directly from the patient about the status of a patient’s health condition without amendment or interpretation of the patient’s response by a clinician or anyone else.” The self-report… Continue reading FDA’s New Guidance on Patient-Reported Outcomes
PatientsLikeMe Acquires Online Pain Management Company, ReliefInsite
Today’s news release announcing acquisition of ReliefInsite. Want to receive future announcements? Sign up for our RSS feed on the press page. – – – FOR IMMEDIATE RELEASE PATIENTSLIKEME ACQUIRES ONLINE PAIN MANAGEMENT COMPANY, RELIEFINSITE 20,000 Patients Reporting Moderate to Severe Pain on PatientsLikeMe Cambridge, MA and New York City, NY – February 16, 2010… Continue reading PatientsLikeMe Acquires Online Pain Management Company, ReliefInsite