“Stiff Lungs” -Ian’s Personal Journey from Idiopathic Pulmonary Fibrosis Diagnosis to Lung Transplant

“Short of Breath? See your Doctor,” said the poster in the pharmacy. I’d been short of breath for some time, but put it down to an unhealthy lifestyle, being 58 and being overweight. The poster encouraged me to visit my doctor, which I did. He sent me for a chest X-ray and I could tell… Continue reading “Stiff Lungs” -Ian’s Personal Journey from Idiopathic Pulmonary Fibrosis Diagnosis to Lung Transplant

PATIENTSLIKEME AND BOEHRINGER INGELHEIM ESTABLISH HEALTH INFORMATION COLLABORATION FOR PATIENTS WITH IDIOPATHIC PULMONARY FIBROSIS

CAMBRIDGE, Mass. — February 28, 2013—On Rare Disease Day®, PatientsLikeMe announces a new collaboration with Boehringer Ingelheim to enhance its online patient community for people with idiopathic pulmonary fibrosis (IPF), a rare lung condition with no known cause, treatment or cure. Through a customized experience on PatientsLikeMe, IPF patients can now monitor their health and… Continue reading PATIENTSLIKEME AND BOEHRINGER INGELHEIM ESTABLISH HEALTH INFORMATION COLLABORATION FOR PATIENTS WITH IDIOPATHIC PULMONARY FIBROSIS

Creating an Open-Access Platform for Patients: An Interview with Jamie Heywood and Paul Tarini

RWJF has awarded PatientsLikeMe a $1.9 million grant to create the world’s first open-participation research platform to develop patient-centered health outcomes. The new platform will be linked with the PatientsLikeMe network to help researchers develop health outcome measures that better reflect patients’ experiences with a disease, and assess health and quality of life in ways… Continue reading Creating an Open-Access Platform for Patients: An Interview with Jamie Heywood and Paul Tarini

RWJF AWARDS $1.9 MILLION GRANT TO PATIENTSLIKEME TO CREATE WORLD’S FIRST OPEN RESEARCH PLATFORM TO DEVELOP PATIENT-CENTERED HEALTH OUTCOME MEASUREMENTS

Real-time health learning system will generate health outcome measures that are meaningful to patients and align medical research with patient needs February 25, 2013—Long Beach, CA—PatientsLikeMe has been awarded a $1.9 million grant from the Robert Wood Johnson Foundation (RWJF) to create the world’s first open-participation research platform for the development of patient-centered health outcome… Continue reading RWJF AWARDS $1.9 MILLION GRANT TO PATIENTSLIKEME TO CREATE WORLD’S FIRST OPEN RESEARCH PLATFORM TO DEVELOP PATIENT-CENTERED HEALTH OUTCOME MEASUREMENTS

Living with Psoriasis: PatientsLikeMe Member Lissa Featured on Patient Power

“I don’t really know too many people around here with psoriasis.   It was hard to relate with somebody.  My family, my friends, my husband, they’re great support, but they can only see what I’m going through, they can’t go through it the way I do.  It’s really important to be able to connect with people… Continue reading Living with Psoriasis: PatientsLikeMe Member Lissa Featured on Patient Power

PatientsLikeMe Named One of Lead411’s “Hottest Companies in Boston”

Is it getting hot in here? Earlier this month, corporate research firm Lead411 announced its 2012 “Hottest Companies in Boston” awards, which recognize the fastest growing technology companies in the Boston area.  The award selection process started with over 1,776 companies and was narrowed down to the top 62.  We were one of them! Headquartered… Continue reading PatientsLikeMe Named One of Lead411’s “Hottest Companies in Boston”

H@cking Medicine: Open Up!

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… Continue reading H@cking Medicine: Open Up!

One for All (Video): The Road Ahead at PatientsLikeMe

“We’re just getting started on a long road to really impact your individual disease and your quality of life…” Each week this month, we’ll be posting a video interview with a member of the PatientsLikeMe executive team.  You’ll hear from Ben Heywood, Jamie Heywood, David S. Williams and Paul Wicks, Ph.D. about what the recent… Continue reading One for All (Video): The Road Ahead at PatientsLikeMe

PatientsLikeMe Refutes Published Clinical Trial

Congratulations to our R&D team here at PatientsLikeMe for its most recent paper published in Nature Biotechnology (“Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm”).  The full paper has been made available by Nature so you can read the results and access all of the supplemental data and figures. Below are… Continue reading PatientsLikeMe Refutes Published Clinical Trial

The Patient Voice Heard Loud and Clear at AHCJ ’11

Last week, we had the opportunity to be a part of the Association of Health Care Journalists (AHCJ) annual conference in Philadelphia, PA.  Carla Johnson, medical writer for the Associated Press, invited PatientsLikeMe to be part of her session entitled “Tapping into the e-patient phenomenon.”  It was a great opportunity for us to help healthcare… Continue reading The Patient Voice Heard Loud and Clear at AHCJ ’11