paul wicks

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 Public Library of Science. Snake Oil?  Scientific Evidence for Health Supplements A very cool health data visualization from Information Is Beautiful. Facebook Urges Readers to Add Organ Donor Status Are you going to add your organ donor status? Glenn Close:  Let’s End the Stigma Around Mental Illness A great look at how we discuss mental illness – and the impact our words can have. What are you reading?  Share your recommendations in the comments section.

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 test to tell you exactly how patients are doing, the main outcome measure used to record how PALS are doing is an instrument called the ALS Functional Rating Scale – Revised (ALSFRS-R). It’s a short, 12-item questionnaire that is the “gold standard” tool for clinical trials, but it has one important caveat: it’s normally only completed by clinicians (doctors, nurses, research assistants, etc.). When PALS take part in clinical research studies the questions are read out loud to them and patients are not normally allowed to see their ALSFRS-R scores. When we launched PatientsLikeMe, the concept that we would give patients their very own copy of the ALSFRS-R scale and let PALS see their scores was controversial, and although we’ve gone on to publish a number of studies using the ALSFRS-R and even expanded it for highly impaired patients, the question has always remained: is …

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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 computer geeks hacking into secure private networks to fulfill their own curiosity or liberate secret knowledge. Today, voluntary “data liberation,” as practiced by governments and corporations, is relatively commonplace and semiorganized groups with data freedom agendas, such as Wikileaks and Anonymous, have entered the mainstream consciousness. For me, it feels increasingly challenging to delineate the margins where free data is good or bad. A highly networked, mobile-enabled popular uprising is considered a “revolution” when it’s against an oppressive regime, but considered a “menace” when it is a disenfranchised mob rioting in a western democracy. Bravely recorded videos of civilians attacked by autocratic regime military forces are essential in prosecuting crimes against humanity, but videos leaked from within a democratic military are a “threat to national security.” So while data itself may want to be free, we don’t always want it to be. And so, to …

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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 dealing with illness to know that they are not alone and that we are all in this together.” – Ben Heywood, President and Co-Founder “I hope Santa brings you all your health data and that you will share it with other patients like you!” – Paul Wicks, PhD, Research & Development Director “I wish for people to have the most happy, healthy, and joyous holidays filled with the unparalleled love from those who matter in their lives.” – David S. Williams III, Chief Marketing Officer and Head of Business Development “My wish for patients everywhere is that they continue to learn about their chronic conditions and keep updated on the latest treatments from multiple sources.” – Robert Palladino, Chief Financial Officer “All of us at PatientsLikeMe wish you and those you love a holiday of joy and grace.” – Jamie Heywood, Chairman and Co-Founder Happy …

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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 are links to a few videos highlights from the event, including the award presentation on Tuesday night. As you’ll hear in the organizer’s introduction, the criteria for TR35 (the best young innovators under the age of 35) is to recognize individuals who are doing transformative work. “They are presenting a concrete solution to a big, almost ideally civilization-scale problem.” MIT Technology Review then names one TR35 recipient as “Humanitarian of the Year” to recognize the use of technology in “progressing the human condition.” What does Paul have to say about receiving this incredible honor? Jump to the 3:40 mark in the video below to see his onstage interview and award presentation. You can also get a quick glimpse here of TR35 recipients’ work on emerging technologies in health care or hear more in-depth from Paul and fellow award winners in this 40-minute panel discussion.

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 this about the patient. But it started like everyone else. You get that phone call, and your life changes.” – Jamie Heywood, Co-Founder Recently, we launched a new and improved About Us page that included a short video about our company history. Now, we’re pleased to unveil a longer, more in-depth video that allows you to hear our founding story from four PatientsLikeMe executives and learn what drew each of them to become a part of our groundbreaking concept. Tune in below to hear where it all started and why, five years later, we’re committed to continuing the journey we’re all on – as a company, as patients and as family members of those affected by disease. You can also watch this insightful piece (~15 minutes) in three smaller segments:  Chapter 1, Chapter 2 and Chapter 3.

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 our lives, and much more. So why not celebrate?” Mashable is encouraging everyone who uses social media to take part in the second annual celebration. Some examples including organizing a Social Media Day get together on Meetup, posting photos from your get together on Facebook and using the hashtag “#smday” on Twitter. We would add updating your PatientsLikeMe profile and reaching out to another patient like you to this list of possible celebratory activities. That’s because, at PatientsLikeMe, we’ve seen how social media has transformed the lives of patients. Before, there was only the information and advice provided by your doctors. Now, you have access to a wealth of real-world experiences and data from patients around the globe. As a result, you can ask smarter questions, make better decisions and take greater control of your own care. Social media has also helped to accelerate medical …

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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 changes to PatientsLikeMe mean for patients, research, industry and the entire medical establishment. Today, listen in to hear what Ben has to say about why we’re on this “road,” what has been improved with the recent upgrades and how sharing your own health journey moves us forward.  You can also see last week’s video teaser here.

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 of nurses, speech and language therapists, physios, and occupational therapists at King’s College Hospital and the Maudsley Psychiatric Hospital in South London.  As you probably know, the United Kingdom (UK) has a very different health system to the United States (U.S.). The National Health Service (NHS), formed in 1948 as part of post-war reconstruction, has three core principles:  1) To meet the needs of everyone, 2) to be free at the point of delivery, and 3) to be based on clinical need rather than ability to pay.  Against an aging population and rising medical costs, however, the NHS needs to continually innovate in order to remain cost effective, and the UK’s coalition government has set an ambitious target to maintain quality of care while cutting £20 billion from the NHS budget (approximately $32 billion). Earlier this month, PatientsLikeMe was invited to participate in the NHS’ …

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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 patients like you are actually using your treatments.  We’ll highlight both studies here on the blog today and tomorrow.  (Note: Because JMIR is an open-access journal, the articles are free for you or anyone to read in full, without fees or subscriptions or a library card.) Study One:  Off-Label Drug Usage Our first study looked at the rates of off-label drug usage in our communities.  What do I mean by “off-label”?  When a drug is approved by the FDA (or outside of the US, by other regulators such as the EMEA), it is “indicated” for the treatment of a specific condition, which permits the manufacturer to market it to doctors who treat that condition and patients diagnosed with it.  This indication is described on the medication’s label. Any physician may choose to prescribe a treatment for a purpose that has not been indicated, however.  This …

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