Last week I had the pleasure of attending the Institute of Medicine’s (IOM) Partnering with Patients workshop, where PatientsLikeMe’s Health Data Integrity & Patient Safety Director Sally Okun, RN, MMHS, and PatientsLikeMe member Laura Phillips, who has multiple sclerosis (MS), shared the stage as co-presenters. It was a novel approach to incorporate a patient co-presenter into… Continue reading Partnering with Patients to Improve Healthcare
PatientsLikeMe in the News
It’s been a busy couple of weeks at PatientsLikeMe. Here are a few media highlights showcasing all the exciting things that are going on, from new partnerships with Aetna and Boehringer to the major grant we were awarded by the Robert Wood Johnson Foundation to TED2013 Fellow Paul Wicks’ presentation at TED2013 last week. PatientsLikeMe… Continue reading PatientsLikeMe in the News
“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
Living with Idiopathic Pulmonary Fibrosis
What is idiopathic pulmonary fibrosis (IPF)? How many people does it affect? Do we know what the cause is? Can it be treated? If you don’t know the answers, you’re not alone. IPF is considered a rare disease by the National Institutes of Health and much of the research surrounding it is not definitive. So… Continue reading Living with Idiopathic Pulmonary Fibrosis
Raise Your Hands for Rare Disease Day
Today, February 28th, is Rare Disease Day, a worldwide event showing solidarity with rare disease patients and their families around the globe. The theme for this year is “Raise and Join Your Hands,” and everyone is being asked to participate, whether you’re an individual, an office with 10 people or a public gathering with 1,000… Continue reading Raise Your Hands for Rare Disease Day
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
Psoriasis and Bullying
Teasing.Physical violence.Staring.Social isolation.Name-calling. Many of our members with psoriasis, a chronic autoimmune condition that can produce red, scaly patches and other skin symptoms, report experiencing various forms of bullying while growing up. One relays the story of a teacher who repeatedly sent her to the nurse’s office, assuming that she had a contagious condition. Another… Continue reading Psoriasis and Bullying
What Is Health?
It seems like a basic question, but at PatientsLikeMe, we’ve spent a lot of time thinking about what it means. Check out Co-Founder and Chairman Jamie Heywood’s thought-provoking presentation below at the Swiss Re Centre for Global Dialogue’s “Future of Human Longevity” conference. Can you really understand concepts such as health, mobility or well-being without… Continue reading What Is Health?