This weekend, MIT is hosting the first H@cking Medicine conference and PatientsLikeMe is proud to be a sponsor. The hacking encouraged here isn’t malicious, rather, it refers to a passionate subculture of computer programmers who believe in sharing, openness, and innovation (among other things). Those are three concepts near and dear to us here at […]
H@cking Medicine: Open Up! Read More »
“I got this call from my brother Stephen, and he said the news doesn’t look good. At that point, he’d been through enough processes to know what that meant – he had ALS. So I began this journey with my brother and my family…. We were thinking there had to be a way to make
A Little More About Us: A Look Back at the Founding of PatientsLikeMe Read More »
“Patients know what patients want to know.” – Dave deBronkart Blogger, author and international keynote speaker Dave deBronkart is a familiar name at PatientsLikeMe, as his writings and health talks tend to strike a chord with us. You see, “E-Patient Dave,” as he calls himself, has a story that underscores exactly why we founded PatientsLikeMe. After
Let Patients Help: The Undying Mission of E-Patient Dave Read More »
Mark Twain popularized the notion that there are three kinds of lies: “lies, damned lies, and statistics.” But there’s a cure for bad statistics, and that cure is openness. When our study of the effects of lithium in ALS was published in Nature Biotechnology, we not only presented the usual background and analysis, but we
Giving Health Statistics a Good Name Read More »
“Today is a day of massive celebration of what health innovators have done,” said US Department of Health & Human Services’ Chief Technology Officer Todd Park this morning as he welcomed everyone to the 2nd Annual Health Data Initiative Forum (or “Health Data-Palooza,” as Park called it). The goal? To create “a self-propelled, open ‘ecosystem
Improving the Clinical Trial Process with Shared Data Read More »
Like many of the changes we make to our site, the recent upgrades at PatientsLikeMe – including opening up the site to any patient with any condition and allowing you to share multiple conditions through your profile – were the direct response to what you, our patients, have asked from us. Over the past five
Four Issues, Four Solutions: The Evolution of PatientsLikeMe Read More »
Today, PatientsLikeMe announces its expansion in the following news release. (You can click on the image on the right to see a visualization of real-time profile views on PatientsLikeMe.) ***** CAMBRIDGE, MA–(Marketwire – April 11, 2011) – Today, PatientsLikeMe (www.patientslikeme.com) announces the expansion of its platform and invites patients with any condition to join. The five-year-old
PatientsLikeMe Calls All Patients With Any Condition to Join Read More »
At PatientsLikeMe, we have a Privacy Policy that explains what we do with the health data that patients like you share. But as many of you know, we also have an Openness Philosophy, which outlines what we believe are the substantial benefits of being open versus private about your condition. Here’s an excerpt: “Currently, most
Patient Choices: How Open Are You Now? Read More »
In these days of Facebook and Twitter, the media is abuzz with news of “over sharing” of sensitive, personal or trivial information – everything from your current location to what you were up to over the weekend. Members on our site may choose to share some of this, but what about some of the less
Patient Choices: The Shape of Sharing Read More »
2010 was a strong year for business development at PatientsLikeMe. Our goal was – and continues to be – to align patients’ needs with industry interests in order to maximize interaction between the two. Here are a few of our successes and challenges over the year. Successes 1. New Partnerships, New Communities In the first
Aligning Interests: A PatientsLikeMe Year in Review (Part VII – Business Development) Read More »
