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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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Who’s #2 in Healthcare Innovation?
You guessed it – PatientsLikeMe

It’s been an exciting few months for PatientsLikeMe.  Here’s a quick recap… Today, Fast Company released its annual  ranking of the 50 Most Innovative Companies in the World.  PatientsLikeMe made #23 on the list alongside big league companies like Facebook, Disney, Novartis and Amazon.  PatientsLikeMe was also named the second most innovative company in healthcare, behind powerhouse General Electric (GE).  Read our news release about it here and the magazine article featuring one of our MS patients. To commemorate this honor, we’ve interviewed our President and Co-founder, Ben Heywood, in our first-ever PatientsLikeMe podcast (hosted by our own Aaron Fleishman).  Listen in! Speaking of innovation, what do Bill Gates, Al Gore, Steven Hawking, Goldie Hawn, David Blaine and PatientsLikeMe Co-founder Jamie Heywood have in common? All of these innovators have graced the stage at a TED event. A nonprofit that brings together innovative people from “Technology, Entertainment and Design,” TED’s mission is to simply spread ideas.  Isn’t that another way of saying “share?”  We do love that concept.  Here’s Jamie at TEDMED (the healthcare-focused TED event) sharing our vision on the future of medicine in his presentation, “The Big Idea My Brother Inspired.” Finally, we’d like to give a shout …

Who’s #2 in Healthcare Innovation?
You guessed it – PatientsLikeMe
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Doctor viewing health data

Taking Control of Your Health Data and Why It Matters

While the healthcare industry has attempted a more patient-centric approach over the last 20 years, consumers today demand even more from companies, led in large part by the transformation of traditional retail consumer experiences, such as Amazon and Uber. As a result, better patient outcomes are starting to become expected rather than just wished or hoped for. But while attempting a patient-centered approach, patient centricity has become an overused industry catchphrase that belies the healthcare industry’s failure to prioritize easier access to patient data to improve patient engagement and drive better outcomes. Patient empowerment lies right at the heart of the patient-centric movement where consumers are starting to take back control of their health data and, with it, a far more active role in their healthcare decision-making. “We are entering an era of ‘patient-centered medicine in which patients and their care partners participate actively in decision-making and priority-setting about all aspects of health care,” said Nina Hunter, the FDA’s former Deputy Director for Medical Programs. “Americans are becoming increasingly active consumers of health care, making choices about their doctors, diagnostics, treatments, and healthcare experiences rather than simply allowing health care providers to make the decisions for them.” The biggest challenge …

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Are we really more likely to cry when watching movies on planes? New study de-mystifies the urban legend

The Oscars have been awarded and spring travel is in full swing, which got us thinking about the urban legend that you’re more likely to cry watching a movie on a plane than on the ground. Is it just a myth or is there more to it? While celebrities, polls and pop culture have covered the phenomenon — also jokingly known as altitude-adjusted lachrymosity syndrome (AALS) — no true scientific research has studied it. Until now. An idea takes flight: The study set up Paul Wicks, VP of Innovation at PatientsLikeMe, studies emotional lability, or uncontrolled crying and laughing, in people with amyotrophic lateral sclerosis (ALS, or motor neuron disease). But he’s also a frequent flier, and on a trip back from an ALS conference found himself a little weepy while watching Selma on a flight. “Although I was studying this uncontrollable emotional expression in people with a medical condition, I thought maybe lots of healthy people might have uncontrollable, unexplained outburst of crying in certain settings, too.” Enter the first scientific study on AALS. Wicks surveyed 1,084 people living in the United States who had watched a movie on a plane in the last 12 months. Participants answered questions about the films they viewed, …

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It’s Clinical Trials Day, and patients are driving change

Today is Clinical Trials Day – celebrated to bring more attention to public health and also to recognize the contribution of the patients and healthcare professionals who make clinical research possible. At PatientsLikeMe, it’s members who are changing the way clinical trials are designed. Bringing the patient voice to clinical trials has long been part of the PatientsLikeMe mission. Jeremy Gilbert, Vice President, PLM Health and Paul Wicks, Ph.D., Vice President, Innovation, sat down with us last year to talk about the importance of putting patients at the center of drug discovery and development. Check out their Q&A here. Recently, Paul Wicks touched on the purpose behind the latest PatientsLikeMe study on clinical trial design involving the patient perspective, and why organizations need to work on improving their trial process: “As researchers we know that clinical trials are the best tool we have for identifying new, safe, effective treatments. Patients know this, too, and they’re motivated to take part. But what this research tells us is that actually participating in a trial is not a fun experience; about as much fun as dealing with the worst airlines, banks, or utility companies, and we all know how that can be. This …

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Paul Wicks on the power of sharing data

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 you and the ALS community has shared about living with ALS over the last 10 years. Here’s what Paul had to say: “We hope this presentation shows the power of patients sharing their data to help shed light on ALS. It’s a disease that can isolate people, rob them of their voice, and sap their strength to fight back, so we’re proud that we’ve been putting the data our members share to good use for over a decade now and we’re keen to share some highlights of what we’ve found.” What do you think about Paul’s presentation? Share your thoughts in the forum. Share this post on Twitter and help spread the word.

Behind the scenes of clinical trials: An interview with Dr. Ross Zafonte from Spaulding Rehabilitation Network

Have you ever been asked to take part in a clinical trial? According to a soon-to-be-published survey on PatientsLikeMe, most of our members (2 out of 3) have never even discussed taking part in a clinical trial with their physician and only about 1 in 5 have ever taken part in a clinical trial. This is an alarming problem because the tools and technology at our disposal today leave gaps which must be filled by new innovations. There’s a risk that we continue prescribing medicine that doesn’t work as well as it should, or to people who will never fully realize the benefits. Over the last few years at PatientsLikeMe, we’ve taken a new approach to help solve some of these problems. Well, it’s actually not new to us at all, but it is novel for the industry: build trials based on the patient perspective. We partner with leading life science companies and help them understand what matters most to patients in clinical trial design by going directly to the community for their opinion. Listening to what patients have to say can help with trial recruitment and retention, which you’ll read more about in just a minute. For more insight, …

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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 to patients living with amyotrophic lateral sclerosis (ALS). The Lunasin Virtual Trial is the first study of the supplement in ALS patients and follows a review analyzing its potential to reverse ALS in ALSUntangled, a website for clinicians, patients and researchers to explore alternative treatments. Duke ALS Clinic Director and ALSUntangled Founder Richard Bedlack, MD, said he first heard about Lunasin’s potential from Mike McDuff, an ALS patient who took the supplement and experienced dramatic improvements in speech, swallowing and limb strength. “I reviewed Mike’s records and reports, and both his diagnosis and his improvements appeared real,” Bedlack said. “Of course, Mike might have an ALS mimic we don’t know how to test for, or his body may have found a way to beat ALS independent of treatment. But there is one more possibility: his Lunasin regimen might have actually worked. I was compelled to …

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Bringing the patient voice to clinical trials

PatientsLikeMe has a long tradition of bringing the patient voice into drug discovery and development, but it’s only been in the last year or two that industry has been tuning in to hear what that voice is saying about clinical trials. For the last 18 months, we’ve been asking many of our members about their attitudes toward and experiences with clinical trials, and working to ensure pharmaceutical companies understand what patients want most from trials, now and in the future. We talked with Jeremy Gilbert, Vice President of PLM Health, and Paul Wicks, Vice President of Innovation, about what we’ve found, and how that’s already helped to change the design and execution of trials and their future direction. Jeremy will be presenting more about this topic and details of a key project with AstraZeneca and Takeda that leverages the patient voice in new ways at the Patient-Centered Clinical Trials Conference in Philadelphia on October 11. More info about discounted tickets below.   You’ve surveyed more than 1,400 people about their experiences and opinions with clinical trials. What have they shared, and what has PatientsLikeMe done with that information? Jeremy: A lot of people in our community are living with life-altering, degenerative …

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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 help other pALS live a better quality of life. He’s founded the ALS Residence Initiative, which has grown from the first fully-automated, vent-ready ALS Residence in Chelsea, Mass., to multiple residences across the country that offer pALS independent living alongside 24-hour care.Steve sat down with us last week to share about his latest project: producing a series of educational short videos to help caregiving and medical staff better understand the unique care needs of pALS. But what does this patient-conceived project mean for research? We caught up with our VP of Innovation, Paul Wicks, PhD., to chat more about this project from a research standpoint. Here’s what he had to say: Working with members for research is in PatientsLikeMe’s DNA, but this collaboration with longtime ALS member Steve Saling (SmoothS) takes it to another level — the project was conceived and driven by Steve. What do you think about …

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