“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… Continue reading A Little More About Us: A Look Back at the Founding of PatientsLikeMe
Tag: openness philosophy
Let Patients Help: The Undying Mission of E-Patient Dave
“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… Continue reading Let Patients Help: The Undying Mission of E-Patient Dave
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
Should You Share Your Health Information Online?
Openness. Privacy. These philosophies stand in direct opposition in the question of which is better for consumer health. Should people be open with their health information or private? Certainly there are times for both, right? Not according to some privacy advocates. On October 22, 2008, Deven McGraw from the Center for Democracy and Technology cited… Continue reading Should You Share Your Health Information Online?
How representative are PatientsLikeMe patients to the general population?
Mimi Yin over at The Common Data Project blog posed some interesting questions about data in our communities: Back in April, I wrote about the site PatientsLikeMe.com, which provides a wonderful new service that allows individual users to share the most intimate details of their medical conditions and treatments, which in turn creates a pool… Continue reading How representative are PatientsLikeMe patients to the general population?
PatientsLikeMe Featured in New York Times Magazine
In one of the greatest honors in our young company to date, PatientsLikeMe was featured in today’s New York Times Magazine. The article, entitled Practicing Patients, appropriately discusses the pros and cons associated with sharing data-rich personal health information in an open community. PatientsLikeMe seeks to go a mile deeper than health-information sites like WebMD… Continue reading PatientsLikeMe Featured in New York Times Magazine
To spit or not to spit (openness gets personal)
Over the past seven months of working at PatientsLikeMe, I’ve come to think that the idea of sharing medical and health information is completely normal. Since giving birth to my nearly 3 year old daughter, I have continued to be eternally grateful to other mothers who have willingly and openly shared their deeply personal experiences… Continue reading To spit or not to spit (openness gets personal)
Benjamin Heywood Interviewed by the Health Business Blog
Bringing the New Year in right, Benjamin Heywood, CEO of PatientsLikeMe, was interviewed by David E. Williams, publisher of the Health Business Blog (not to be confused with David S. Williams who works with PatientsLikeMe). In the interview, Ben discusses the future of the company, its ground-breaking Openness Philosophy, and the differentiation of PatientsLikeMe versus… Continue reading Benjamin Heywood Interviewed by the Health Business Blog
The Value of Openness
Welcome to the PatientsLikeMe blog. Here you will get firsthand accounts of our growth and how we are impacting global health care. Why have we chose the name “The Value of Openness”? Read our Openness Philosophy below, and you’ll see why. ________________________ Openness is a good thing. Most healthcare websites have a Privacy Policy. Naturally,… Continue reading The Value of Openness