Back in December, our VP of innovation, Paul Wicks, Ph.D., spoke at the annual International Symposium on ALS/MND in Dublin. The goal of the annual meeting is to share new understandings of ALS/MND as quickly as possible through collaboration between leading researchers around the world. Now, we’re sharing a video of his presentation about what… Continue reading Paul Wicks on the power of sharing data
Category: Research
The record on research: Catching up with TOA member Cris
Back in January we introduced Cris, a member of the 2016-2017 PatientsLikeMe Team of Advisors living with ALS. She’s also a fierce patient advocate who’s participated in several clinical trials since her diagnosis. We recently caught up with her to learn about her experience with clinical trials and why access and awareness of clinical trials… Continue reading The record on research: Catching up with TOA member Cris
Largest Patient Poll on ACA Shows Patients Value Health Care Law More Than the General Population, Are Less Inclined to Want a Repeal
Lowering Costs, Coverage for Pre-existing Conditions Remain Top Priorities; If Changes Are Required, Individual Mandate Should Go CAMBRIDGE, Mass., February 7, 2017—As Congress and the White House continue to discuss potential changes to the Affordable Care Act (ACA), PatientsLikeMe revealed results from the first large-scale poll to assess patient priorities for the health care… Continue reading Largest Patient Poll on ACA Shows Patients Value Health Care Law More Than the General Population, Are Less Inclined to Want a Repeal
The power of your data: Patient empowerment
We’re more than halfway through 24 Days of Giving and we’ve been sharing how patient data has the power to create better communities, better care and a better you. So, while we’re on the subject of you – let’s talk more about how patients see themselves as the captains of their own health when it… Continue reading The power of your data: Patient empowerment
The power of your data: How it works for you
For these 24 Days of Giving, we’ve been sharing how patient data has the power to change healthcare for the better. But how does the data you donate work for YOU in your own health journey? PatientsLikeMe members are starting to answer that as part of an ongoing initiative, giving us feedback about the benefits… Continue reading The power of your data: How it works for you
The power of your data: Members define compassionate care
For these 24 Days of Giving, we’re rethinking what it means to give and how the power of patient data can change healthcare for the better. Here’s a snapshot of your data in action. Let’s talk compassionate care. Our partners at the Schwartz Center for Compassionate Healthcare had developed a scale based on input from… Continue reading The power of your data: Members define compassionate care
PatientsLikeMe Launches Virtual Trial for ALS Patients
Study With Major Academic Medical Center to Evaluate the Potential of the Soy Peptide Lunasin to Reverse ALS Symptoms DURHAM, N.C., October 25, 2016—PatientsLikeMe and The Duke ALS Clinic have just completed enrollment in a virtual trial designed to test whether Lunasin, a peptide found in soy and some cereal grains, is helpful or harmful… Continue reading PatientsLikeMe Launches Virtual Trial for ALS Patients
Paul Wicks weighs in on a new, patient-conceived project
Partnering with patients is at the very core of what we do, but a new collaboration with longtime ALS member Steve Saling (SmoothS) is giving that a new spin — it was Steve’s idea and he’s been driving the project from day one. Since his diagnosis in 2006, Steve has made it his mission to… Continue reading Paul Wicks weighs in on a new, patient-conceived project
PatientsLikeMe Names Marni Hall Senior Vice President
Former Director within the FDA to Spearhead Company’s Research and Policy Initiatives CAMBRIDGE, Mass., July 11, 2016—PatientsLikeMe announced today it has appointed Marni Hall, PhD, MPH, as its new Senior Vice President of Research and Policy. A distinguished research scientist and public policy expert, Hall will develop and direct the strategies and teams focused on… Continue reading PatientsLikeMe Names Marni Hall Senior Vice President
What’s your experience with accessing your electronic medical records?
Hi everyone! I’m Sally Okun, Vice President for Advocacy, Policy and Patient Safety at PatientsLikeMe. Most of you probably already know me, but just in case you don’t, I really focus on bringing the patient voice to affect better treatment, services and care, and to be sure that the needs of patients are at the… Continue reading What’s your experience with accessing your electronic medical records?