jamie heywood

PatientsLikeMe Unveils New Tool to Match Patients with Clinical Trials Worldwide

Launch at European NHS Healthcare Innovation Expo Comes as PatientsLikeMe Chairman Calls for Revolution in Disease Measurement CAMBRIDGE, Mass. — Mar 13, 2013 — The U.S.-based patient network and real-time research platform PatientsLikeMe unveils its global clinical trials tool today at Europe’s Healthcare Innovation Expo 2013, hosted by the National Health Service (NHS). The free tool, unveiled today by Research Director Paul Wicks Ph.D., draws on open data to match patients from around the globe with clinical trials based on their condition and location. The U.S. prototype was launched last year and has already helped thousands of patients find suitable clinical trials.  The tool is available at http://www.patientslikeme.com/clinical_trials. “Open data helps us accelerate the pace of research, and it’s crucial we do everything possible to match patients to trials that might advance treatment and help them live better with their condition,” says Wicks, a newly named TED Fellow and UK scientist. “We’re excited to be at this year’s Expo to learn what British and European healthcare innovation has in store for the NHS.” Last week, PatientsLikeMe Co-founder and Chairman Jamie Heywood spoke about innovative solutions to healthcare at the 2013 Nuffield Trust Health Policy Summit in London. Nuffield Trust is an independent source of evidence-based research and …

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Creating a Revolution at the Nuffield Trust Health Policy Summit 2013

Last week, health leaders from around the world gathered in the UK for the Nuffield Trust Health Policy Summit 2013, a two-day event focused on evidenced-based research and innovative solutions to the challenges facing the National Health Service (NHS).  One of the invited speakers was PatientsLikeMe Co-Founder and Chairman Jamie Heywood, who discussed the drug development process as well how patients can drive value in healthcare.  Tune in to hear Jamie’s well-received presentation below, which was titled “Creating a healthcare revolution.” Health Policy Summit 2013: Jamie Heywood from Nuffield Trust on Vimeo.

Raise Your Hands for Rare Disease Day

Today, February 28th, is Rare Disease Day, a worldwide event showing solidarity with rare disease patients and their families around the globe.  The theme for this year is “Raise and Join Your Hands,” and everyone is being asked to participate, whether you’re an individual, an office with 10 people or a public gathering with 1,000 people. Here at PatientsLikeMe, we are taking part by raising our hands and sharing our group photo in solidarity with the campaign as well as all of our members living with rare diseases, which affect 1 in 10 people worldwide.  You are encouraged to submit your own photo here. Rare diseases are a special passion for PatientsLikeMe, as our company was started due to our founders’ experience with a rare disease called ALS (Lou Gehrig’s disease).  Since then, we’ve partnered with the Global Genes Project to form the RARE Open Registry Project to connect patients fighting rare diseases and help them share and learn. “It’s terrifying to think you’re alone and manage your rare illness with a doctor who might not have ever seen another patient like you,” says PatientsLikeMe Co-Founder Jamie Heywood. “We will change that.”  Most recently, we launched the world’s first open registry …

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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 measuring or comparing them?  See why Jamie argues that you can’t – and also why one’s “health span” may be more important than one’s “lifespan.”  Click the image below to tune in. *After clicking the image above, select the “08:45” link to your left to start the presentation.

Innovating Healthcare Through Shared Patient Knowledge

What happens when a patient finds another patient like them – for example, someone the same age with the same disease taking the same treatments?  Problems get solved, says PatientsLikeMe Co-Founder and Chairman Jamie Heywood. Click on the box below to hear more of Jamie’s thoughts in his interview with Boston.com, the online home of the Boston Globe, as part of an ongoing series called “The Innovators.” From the front door of our offices in Cambridge’s Kendall Square to the engineering team’s color-coded whiteboard, take Jamie’s insider tour of PatientsLikeMe headquarters and learn more about our mission of transforming healthcare. The Innovators: Patients Like Me, Meet James Heywood, Innovator, Chairman and Co-Founder from REEL Entrepreneurs, Inc on Vimeo. For other recent media highlights, visit our Press page.

PatientsLikeMe at the 2nd Annual White Coat Affair for ALS TDI

On Friday, November 2nd, several PatientsLikeMe team members donned their finest to attend the 2nd Annual White Coat Affair, a charity gala benefiting the ALS Therapy Development Institute (ALS TDI).  Founded by PatientsLikeMe Co-Founder and Chairman Jamie Heywood in 1999, ALS TDI is the world’s most advanced research laboratory dedicated to ALS, also known as Lou Gehrig’s disease. This gala fundraiser was held in conjunction with ALS TDI’s 8th Annual Leadership Summit, which included in-depth scientific presentations by top ALS researchers, a discussion panel with industry leaders and an awards ceremony honoring individuals who have made extraordinary contributions to ALS research and advocacy.  (View the summit webcast here.)  PatientsLikeMe was a proud sponsor of this annual gathering of the most influential minds in the ALS community.  In particular, we were honored to witness the posthumous awarding of the Stephen Heywood Patients Today Award – given annually to an individual who exemplifies what it means to be an educator, role model and advocate – to beloved PatientsLikeMe member Persevering (Rob Tison). Held at the Fairmont Copley Plaza in Boston the next night, A White Coat Affair was an opportunity for summit attendees to unwind and socialize via cocktails, a dinner program, live music and …

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PatientsLikeMe Featured on Bloomberg TV

On October 9th, Bloomberg TV aired a four-and-a-half minute “Innovators” segment profiling PatientsLikeMe’s journey as company.  Filmed partially in our office in Cambridge, Massachusetts, the piece features PatientsLikeMe Co-Founder and Chairman Jamie Heywood as well as Ed Sikov, a PatientsLikeMe member with Parkinson’s disease.  Our thanks go to Bloomberg’s Nicole Lapin for her in-depth coverage of our evolution into a data-sharing platform that, as she puts it, “functions more like a clinical trial.” Visit our Press page for other recent PatientsLikeMe media highlights. Watch the Bloomberg TV profile below:

PatientsLikeMe at Medicine 2.0

With more than 500 attendees from 36 countries, the 5th Annual Medicine 2.0 World Congress took place September 15-16th at Harvard Medical School here in Boston.  Among these attendees were several PatientsLikeMe leaders, including keynote speaker Jamie Heywood and conference presenters Sally Okun and Paul Wicks. In an unusual twist, all three PatientsLikeMe speakers got to present back-to-back, starting with Co-Founder and Chairman Jamie Heywood’s opening keynote about how his brother Stephen’s experience with ALS shaped his understanding of basic concepts like health, well-being and disease.  He then shared how PatientsLikeMe was founded to help patients like Stephen record and share their symptom and treatment data in a way that is meaningful to them, other patients and researchers. “Human networks are connecting information and data in ways that have never before existed,” he told the crowd. Next to speak was Dr. Paul Wicks, our Research & Development Director, who gave a presentation entitled “But Will It Scale?  Lessons in Growth from PatientsLikeMe.”  He discussed how PatientsLikeMe evolved from a data-sharing platform for patients with a single disease – ALS – to a general platform serving more than 160,000 patients with more than 1,300 health conditions and a myriad of symptoms.   …

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Scenes from the PatientsLikeMe Company Picnic

Every summer, PatientsLikeMe pulls out the Nerf guns and throws a company picnic for our employees and their families.  This year, the fun took place at Boston’s Museum of Science so that we could enjoy both the museum’s exhibits as well as its prime location on the Charles River. With the Boston skyline twinkling over our shoulders, the team noshed on hamburgers and hot dogs while getting glitter tattoos, playing bocce ball and engaging in our annual Nerf gun war.  Below are a few shots of the afternoon taken by our resident shutterbug and Head of Product, Jeremy Gilbert, who captured the lighthearted feel of the event.  It’s hard to believe summer is almost over, but at least we got in one last gasp. A big thanks to our amazing Office Manager, Alison Dutton, for pulling together another fantastic gathering! Clockwise from Top Left: Jamie Heywood Aiming His Nerf Gun;  Shivani Bhargava, Marni Coons, Tim Vaughan and His Wife Brigid, Courtney Cydylo and David Blaser Spelling Out the Hashtag #YOLO (You Only Live Once) Inside the Museum; Jeanette DeVita and Her Son Isaac; Ben Heywood Showing Off His New England Patriots Glitter Tattoo.

$70,000 at Stake in the “Reporting Safety Events Challenge”

How serious is the U.S. Department of Health and Human Services’ Office of the National Coordinator for Health Information Technology (ONC) about increasing patient safety?   So serious that they are running a contest challenging the best and brightest developers to create a platform that makes it easier to report a patient safety event electronically. The Reporting Patient Safety Events Challenge is offering $70,000 worth of prizes, with $50,000 (and a demo opportunity) awarded to the first place winner, $15,000 to the second place winner and $5,000 to third place winner.  The submission deadline is August 31, 2012.  Learn more about the contest guidelines and 30+ participating developer teams here. “Ideally, we would live in a world of optimal care delivery,” says the ONC.  “Physicians, nurses and care delivery organizations across the country are continuously working to minimize and eliminate errors.  But, until this ideal world exists, we need to invest in infrastructure that helps enable better care quality, risk management and shared learning – all to ensure better care for patients.” PatientsLikeMe fully supports this goal, which is why we introduced our first-of-its-kind adverse event reporting platform in 2009.  As part of a two-year pilot program, our members with multiple …

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