Say hello to John (John_R), a father, grandfather and idiopathic pulmonary fibrosis (IPF) survivor. Sound familiar? Last year he shared his story about life after a double lung transplant and the importance of considering a lung transplant early. This year, John started a Facebook group to live-stream pulmonary fibrosis (PF) support group meetings and conferences.… Continue reading Meeting PF patients where they are
Tag: Openness
“Pay it forward.” Following up with idiopathic pulmonary fibrosis patient and PatientsLikeMe member Lori
This is Lori’s third interview on the PatientsLikeMe blog! She’s been sharing her journey with idiopathic pulmonary fibrosis (a rare lung disease) with all of our followers here, along with her real-world health experiences on her PatientsLikeMe profile. Since the last time we caught up with her, Lori has lost 70 lbs., has made… Continue reading “Pay it forward.” Following up with idiopathic pulmonary fibrosis patient and PatientsLikeMe member Lori
PatientsLikeMe® Poll Reveals Patients Share Health Data Online Prefer to Keep Quiet With Doctors, Employers
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%)… Continue reading PatientsLikeMe® Poll Reveals Patients Share Health Data Online Prefer to Keep Quiet With Doctors, Employers
Patient Choices: The Deciding Factors
In a recent series on patient choices, we’ve highlighted a lot of the decisions patients like you have to make on a daily basis. A few weeks ago, David S. Williams kicked off the series with a blog about the treatment and career decisions that patients like you, and his mother, have made. Kate Brigham… Continue reading Patient Choices: The Deciding Factors
Patient Choices: How Open Are You Now?
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… Continue reading Patient Choices: How Open Are You Now?
Patient Choices: The Shape of Sharing
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… Continue reading Patient Choices: The Shape of Sharing
Aligning Interests: A PatientsLikeMe Year in Review (Part VII – Business Development)
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… Continue reading Aligning Interests: A PatientsLikeMe Year in Review (Part VII – Business Development)
One for All: The Connected Community of PatientsLikeMe
PatientsLikeMe is dedicated to building a platform for the open sharing of personal health data. So far, our community of patients have shared over 600,000 outcome surveys, 300,000 treatment histories, and 2.3 million symptom reports. We believe this enormous collection of health data will dramatically improve how patients manage their conditions. But there are more… Continue reading One for All: The Connected Community of PatientsLikeMe
The Patient Voice | Episode 5: A Little Elbow Grease and a “Can Do” Attitude
I don’t think about what I can’t do,I think about what I can do. – Cher441 Over the past month, we’ve heard several stories about how PatientsLikeMe Parkinson’s Disease community members came together online and made a quilt that has traveled all around the world providing warmth, comfort and a sense of unity for each… Continue reading The Patient Voice | Episode 5: A Little Elbow Grease and a “Can Do” Attitude
The Patient Voice | Episode 4: Weaving An Inheritance
“I’ve had Parkinson’s for 15 years, and I feel like I can help people more by being vocal than I can by being quiet.” -Aunti J Stand up and shout! Episode four of our new podcast series, “The Patient Voice,” is here! For our next interviewee, meet Aunti J. Like many others who contributed to… Continue reading The Patient Voice | Episode 4: Weaving An Inheritance