Last month, PatientsLikeMe’s Sally Okun, VP of Policy & Ethics, was invited to the White House to attend a small executive discussion. The topic? Making the electronic health record (EHRs) experience more patient-centric and accessible, and the importance of “healthcare data interoperability” — the idea that different electronic health record systems should work together in… Continue reading PatientsLikeMe at the White House: A new initiative to give patients more control of their health data
Tag: patient data
Attending Partnering with Patients…as a Patient
Last Friday we heard from PatientsLikeMe Head of Community Liz Morgan about her experiences at the Institute of Medicine’s Partnering with Patients workshop. Today we hear from multiple sclerosis (MS) patient Laura Phillips, a PatientsLikeMe member who spoke at the event. As a speaker at the workshop, Sally Okun, PatientsLikeMe’s Health Data Integrity & Patient Safety Director,… Continue reading Attending Partnering with Patients…as a Patient
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?
A New Way to Import “Blue Button” Patient Data from the VA
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… Continue reading A New Way to Import “Blue Button” Patient Data from the VA
Living with ALS: What We’ve Learned
Yesterday, our interview with ALS blogger and three-star member Rachael gave you a glimpse into what it’s like to live with ALS (Lou Gehrig’s disease). Today we take a closer look using the data and experiences shared by our 4,844 ALS members, who comprise the world’s largest online ALS population. ALS, which stands for amyotrophic… Continue reading Living with ALS: What We’ve Learned
Life with Bipolar I Disorder: What We’ve Learned
Yesterday, our interview with bipolar blogger Andrea gave you a glimpse into what it’s like to live with bipolar I disorder. Today we take a deeper look into this mental health condition using the data and experiences shared by our 1,237 bipolar I members. First off, however, you may have heard of something called bipolar… Continue reading Life with Bipolar I Disorder: What We’ve Learned
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
How Would You Evaluate Your Experience with Muscadol?
Muscadol is an international brand of medication that combines acetaminophen, a widely used analgesic (pain reliever), with orphenadrine citrate, a skeletal muscle relaxant. It is used in the treatment of muscle spasm and tremors associated with various musculoskeletal conditions. At PatientsLikeMe, where more than 120,000 patients are sharing their experiences with conditions, symptoms, treatments and… Continue reading How Would You Evaluate Your Experience with Muscadol?