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: Epilepsy
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?
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
Know Thy Self – Measuring Your Quality of Life
Last Fall, PatientsLikeMe introduced our Quality of Life (QoL) tool which is displayed on the profiles of members in the HIV community. By answering a few questions, patients can see how HIV is impacting them – physically, socially and mentally. Today, this same QoL measure is used by thousands of patients across the HIV community… Continue reading Know Thy Self – Measuring Your Quality of Life
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
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