What’s it like to work at PatientsLikeMe? We are continuing to reveal just that with our monthly blog series “A Day in the Life,” which features PatientsLikeMe employees from different departments. Today we’d like to introduce you to Christine Caligtan, RN, MSN, a registered nurse who has served as our Health Data and Patient Safety Clinical […]
A native of Glasgow, Scotland, Graham Steel is a longtime “Guest Researcher Member” of PatientsLikeMe. Following the death of his brother Richard at the age of 33 from a rare condition known as variant Creutzfeldt-Jakob Disease (vCJD), Graham became involved in patient advocacy work, and most recently, in lobbying for open access to published scientific
The Importance of Open Access: An Interview with Patient Advocate Graham Steel Read More »
(This post has been repurposed from an article written by PatientsLikeMe’s Ben Heywood for eyeforpharma’s Patient’s Week 2011.) Real-world, patient-reported data is becoming more important to you, the patient, as well as everyone in healthcare. One source of that data is patient registries. According to the US Department of Health & Human Services’ Agency for Healthcare Research
Behind Every Piece of Data Is a Patient Read More »
I love the conveniences that come from having my data moved around online (with my permission, of course). For example, TurboTax will pull all my information from my investment bank and the IRS, and then calculate how much I owe. With me doing hardly anything, I’m done in about 20 minutes! Similarly, Mint.com can pull
A New Way to Import “Blue Button” Patient Data from the VA Read More »
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 »
Recently, I had the pleasure of helping to represent PatientsLikeMe at the 2nd Annual Health Data Initiative Forum, which is known as “Health Data-Palooza” to its friends. (See our first blog post about this event here.) The forum was conceived as a way to showcase the wonderful things that people are achieving with open government
Data Mashups, “Wow Week” and the Fruits of Experimentation 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 »
“I think we can see there are a lot of ways where openness can be powerful. What’s necessary is to help facilitate openness and reduce the barriers to sharing medical information.” – Ben Heywood PatientsLikeMe Co-Founder Ben Heywood has blogged previously about openness and sharing – and how important they are for patients. In this
PatientsLikeMeOnCall™: “A Look Ahead” at Openness in Healthcare (Episode 4) Read More »
Patients Unveil Top Reasons Not to Share Health Information CAMBRIDGE, MA–(Marketwire – April 13, 2011) – According to a new PatientsLikeMe® Poll, almost one in three (29%) patients have withheld certain health information from their doctor. Of the 4,364 poll respondents, all of whom are members of PatientsLikeMe’s online health data-sharing community (www.patientslikeme.com), nearly half (47%)
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 »
