What We’re Reading at PatientsLikeMe

Here are some of the media items that grabbed our attention recently. What Air Traffic Can Teach Us About Kidney Transplants Air traffic rules balance fairness and efficiency. Can organ waitlists do the same? Open Access Is Not for Scientists.  It’s for Patients. A guest blog post by our R&D Director, Paul Wicks, for the… Continue reading What We’re Reading at PatientsLikeMe

ALS Patients Reporting Their Health Status over the Internet Just as Reliable as a Clinician in a Hospital

At PatientsLikeMe we’ve been collecting self-reported data about patients with ALS (PALS) since 2006 – over 5,000 PALS to be exact! ALS is a disease that causes muscle wasting in the arms, legs, head and chest, which leads to problems walking, eating, and even communicating. However, unlike a disease like diabetes where there’s a blood… Continue reading ALS Patients Reporting Their Health Status over the Internet Just as Reliable as a Clinician in a Hospital

Information Wants to Be Free

(This post has been repurposed from an article written by PatientsLikeMe’s Paul Wicks for the scientific journal Clinical Investigation.) But when it comes to clinical trials, can we afford to let it be? “Information (or data) wants to be free” – so goes the mantra of hackers and data activists. In the past this meant… Continue reading Information Wants to Be Free

Holidays Wishes from PatientsLikeMe to You

The holidays are a time for thinking about everything you hope and wish for in the coming year.  They’re also a time for appreciating everything you already have.  As our season’s greetings to you, we wanted to share a wish expressed by each member of our management team. “I wish for every patient and family… Continue reading Holidays Wishes from PatientsLikeMe to You

Watch Our Very Own “Humanitarian of the Year,” Dr. Paul Wicks, PhD

In August, we proudly announced that our Research & Development Director, Dr. Paul Wicks, PhD, had been named “Humanitarian of the Year” and a TR35 Honoree by MIT Technology Review magazine. This week, he received both awards at MIT’s annual Emtech event, a two-day conference focused on emerging technologies held at MIT’s Boston campus. Below… Continue reading Watch Our Very Own “Humanitarian of the Year,” Dr. Paul Wicks, PhD

A Little More About Us: A Look Back at the Founding of PatientsLikeMe

“I got this call from my brother Stephen, and he said the news doesn’t look good. At that point, he’d been through enough processes to know what that meant – he had ALS. So I began this journey with my brother and my family…. We were thinking there had to be a way to make… Continue reading A Little More About Us: A Look Back at the Founding of PatientsLikeMe

Celebrate the Role of Social Media Today

Mashable, the pioneering digital and social media news site, has pronounced today Social Media Day. Why? “Social media has changed our lives,” they wrote in 2010, prior to launching the event. “It has not only changed the way we communicate, but the way we connect with one another, consume our news, conduct our work, organize… Continue reading Celebrate the Role of Social Media Today

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 at the NHS Innovations Expo

If you’ve ever tuned in to one of our podcasts or had a chance to view one of our videos, there’s a certain characteristic you might have noticed about me.  I’m British.  Very British indeed. During the course of my academic research career, I spent 6 years working alongside neurologists, psychiatrists, and a multidisciplinary team… Continue reading PatientsLikeMe at the NHS Innovations Expo

How Patients Like You Use Your Treatments in the Real World: Two New Studies

Ever wonder how many patients like you are using drugs off-label?  Or how hard is it to take MS medications as prescribed?  You’re about to find out. In January, the PatientsLikeMe R&D team published not one but two studies in the Journal of Medical Internet Research (JMIR) in an effort to provide answers about how… Continue reading How Patients Like You Use Your Treatments in the Real World: Two New Studies