jamie heywood

Patients as Partners in Personalized Medicine

“It’s only when you really get into the experience of being a patient with a life-changing illness, where you’re dealing with the uncertainty and the process, that you start to learn things.  You start to learn that the experience you’re going through – the pain you’re suffering, or maybe a side effect or something that worked – will never benefit anyone else because no one’s writing it down.” – Jamie Heywood Recently we’ve shared two great interviews conducted by our partner Patient Power:  one with psoriasis patient Lissa and another with multiple sclerosis (MS) patient Marcia. Today we’d like to share another interview conducted by the always thoughtful Andrew Schorr of Patient Power.  This one features PatientsLikeMe Co-Founder and Chairman Jamie Heywood, and it delves into some very interesting questions about the concept of personalized medicine.  Why are patients willing to share their data?  Can the Internet expedite clinical discovery?  What can patients contribute if they are considered full partners in the health care system?  Find out that and more in this insightful discussion.

Quote of the Day: Jamie Heywood

“People often think of PatientsLikeMe as a social network, and I think what they miss is the fundamental part of our invention. What we’re really building is the first medical record designed to answer questions directly for patients. Not to do billing, not to do some other component of the healthcare system. To actually answer questions for patients. Paul Wicks, the Vice President of Innovation at PatientsLikeMe, put down this question: ‘Given my status, what is the best outcome I can hope to achieve, and how can I get there?’  Another way of saying that – because I think that reflects our real mission – is how do we collect all of the meaningful health variables that will allow us to predict the patient’s future and give them the tools to understand how to improve that and all of the elements they care about in their lives?” – PatientsLikeMe Co-Founder and Chairman, Jamie Heywood

The Future of the Personal Genome

“If you want to understand health, you have to understand what it means to be sick, at phenomic and molecular levels, so you can correct it in a holistic and effective way.” – Jamie Heywood In February, PatientsLikeMe Co-Founder and Chairman Jamie Heywood was invited to participate in a “Innovation Series” panel sponsored by the MIT Enterprise Forum of Cambridge.  Entitled The Future of the Personal Genome, the event focused on what lies ahead now that genome sequencing is becoming more affordable for the average person.  (It cost around a million dollars in 2007; today, it costs close to $1,000.) What is Jamie’s perspective on personal genetics, including the issues and opportunities involved?  Check out the first seven minutes of the video below for an overview.  From there, the panel – which included Dr. Michael Pellini, Dr. George Church and Colin Hill, and was moderated by Dr. Kevin Davies – digs into the intricacies of this important topic, including how to use genetic data to develop more personalized medicine.

Jamie Heywood Is One of Hacking Work’s 100 Great Disruptive Heroes

How do you define a disruptive hero?  Here is Hacking Work’s three-pronged filter: Disruptive because they are proving conventional wisdom wrong. Heroes because they are changing the rules of the game, for the better. Great because they helped to change us all for the better. Given these demanding criteria, we are pleased to announce that Hacking Work has recognized PatientsLikeMe Co-Founder and Chairman Jamie Heywood for disrupting the accepted rules of the medical world.  How did his upbringing encourage him to ask questions?  Why does he believe it’s possible to both challenge and respect the healthcare system at the same time? Find out that and much more in this thought-provoking interview:

Meet ALS “Treat Us Now” Steering Committee Member Tom Murphy

You may remember our interview with ALS advocate Debra Quinn from last fall.  Today, we’d like to introduce you to another ALS patient activist in our midst:  Tom Murphy, a PatientsLikeMe member since January 2011.  As part of the ALS Treat Us Now nonprofit group, Tom and several other ALS patients around the country have launched a petition on Change.org that’s gaining steam.  Their goal?  20,000 signatures. Addressed to “corporate citizens, FDA executives and neurologists,” the petition asks that “compassionate use” drugs be made available to ALS patients now.  What this means is that Tom and the Treat Us Now group want promising Phase II drugs showing safety and efficacy to be made available to ALS patients prior to FDA approval.  The reason is simple. ALS patients, who face an average life expectancy of two to five years following diagnosis, don’t have time to wait. Check out our interview with Tom to learn how he became part of ALS Treat Us Now and what two experimental drugs his group is focused on in particular. 1.  How did you get involved in the “Treat Us Now” movement? The ALS community seems to be a very close-knit group of people who readily …

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The Personalized Medicine World Conference in Photos and Tweets

Last week, PatientsLikeMe Co-Founder Jamie Heywood had the honor of speaking at the Personalized Medicine World Conference (PMWC), a two-day event held at the Computer History Museum in Silicon Valley.  His presentation was entitled “Patient Driven Convergence of Clinical Discovery and Care.”  In recognition of the conference’s venue as well as the role that technology plays in personalized medicine, we decided to share some of the “tweets” that Jamie’s talk generated on Twitter. Ruby Gadelrab (@DivaBiotech) tweeted:  “James Heywood, PatientsLikeMe, starts presentation with very poignant picture of his brother suffering from ALS.” Ron Ribitzky, MD (@RonRibitzkyMD) tweeted:  “James Heywood of PatientsLikeMe at PMWC: Industry develops systems that can impact if people live or die, but not giving it to them.” Shirley Wu (@shwu) tweeted: “Heywood of PatientsLikeMe:  At events like this, I often see tech searching 4 problems, not well-defined problems searching 4 solutions.” Ribozyme (@ribozyme) tweeted:  “JH PatientsLikeMe:  If they (were to) add genotype data it would be a huge phenotype-genotype correlation study.” Daniel Kraft, MD (@daniel_kraft) tweeted:  “Talk from @PatientsLikeMe.  Reduced ER visits by 18%. ‘Predict the future so we can change it.’” Are you part of the Twitterverse too?  Follow us @PatientsLikeMe today.  We’re just 25 people …

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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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FOR IMMEDIATE RELEASE Nonprofit and “Not Just for Profit” Announce Collaboration at PartneringForCures Event NEW YORK, NY – November 7, 2011 – Today, PatientsLikeMe and R.A.R.E Project, a nonprofit advocacy and support group for patients with all rare diseases, announce a new partnership to find and connect 1 million rare disease patients to share and learn everything possible about their conditions.  The organizations, co-presenting at the PartneringForCures event today in New York, are launching an international rare disease awareness campaign in 2012. “There are 35 million patients in the U.S. with 7,000+ rare diseases and we want to find them, connect them and support them in sharing and learning by their specific disease and across all rare diseases,” says Dean Suhr, Chief Innovation and Community Development Officer at R.A.R.E.  “We’re excited to work with PatientsLikeMe because their open patient registry allows patients to contribute to research, while getting immediate benefits, like improved quality of life, from sharing this information with others.” The goal of this collaboration between R.A.R.E and PatientsLikeMe, an online health community that started in 2005 for rare disease patients and is now open to everyone, is to allow for better shared learning and acceleration of discovery by …


“A White Coat Affair”: A Wonderful Evening Celebrating ALS TDI

Last night, the PatientsLikeMe team came together for a great cause: the “White Coat Affair” gala benefit in support of 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. Held the night before the institute’s 7th Annual Leadership Summit, the gala event included the presentation of the first-ever “ALS TDI Lou Gehrig Award” to US Congressman Michael Capuano as well as special recognition for ALS TDI Chairman of the Board Augie Nieto, who has raised more than $30 million for the institute since 2007. Congratulations to ALS TDI on 12 years of cutting-edge research and leadership.

H@cking Medicine: Open Up!

This weekend, MIT is hosting the first H@cking Medicine conference and PatientsLikeMe is proud to be a sponsor. The hacking encouraged here isn’t malicious, rather, it refers to a passionate subculture of computer programmers who believe in sharing, openness, and innovation (among other things).  Those are three concepts near and dear to us here at PatientsLikeMe. The goal of the conference is to inspire new ideas and create new relationships so that everyone will leave invigorated and excited about improving healthcare.  According to the H@cking Medicine website, “By using available tools in unconventional ways, we aim to revolutionize delivery of care, empower patients, and design new models of care. Typically, healthcare innovation is painfully slow and, even worse, often increases the cost.  We can make a difference by creating cost-effective solutions without waiting for fundamental advances in science.” To kick off the event on the first day, our own Jamie Heywood (keynote) as well as other leaders in the health care field will inspire audience members with ways to find and learn from the best use of openly shared data. The second day is dedicated to team hacking, and gives coders a practical look at what can be done with …

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