54 posts tagged “jamie heywood”

You helped us reach our goal for #24DaysofGiving!

Posted December 30th, 2015 by

That’s right, you did it again! A big thank you to the PatientsLikeMe community for helping us reach our #24DaysofGiving goal for the second year in a row. Together, you donated 476,243 health data points!  We’ll be making a $20,000 donation to Make-A-Wish® Massachusetts and Rhode Island to help fund life-affirming wishes for seriously ill children.

The final numbers? Check them out:

  • 28,998 treatment reports
  • 117,948 symptom reports
  • 122,249 health outcomes

To show our appreciation for all that you’ve done, we wanted to do something special in return. We made a video featuring some PatientsLikeMe staff talking about why your data donation matters. You’ll hear from co-founders Ben and Jamie Heywood, CEO Martin Coulter and team members from all parts of PatientsLikeMe.

From all of us at PatientsLikeMe, thank you for re-thinking what it means to give this holiday season.

Data for you. For others. For good.

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Hacking our way to new and better treatments with integrated biology

Posted March 13th, 2015 by

When it comes to discovery and healthcare advancements, too many of us are more focused on the processes we use today rather than at a first principals level looking and what’s possible. We are a sector desperately in need of disruption to accelerate the generation of knowledge and lower the costs of developing new treatments for patients today. We need to ask what are the best ways to generate actionable evidence that can benefit patients, clinicians, payers and regulators.

We need to take an integrated approach to biology and treatment discovery.

Large-scale approaches like genetics, the biome, metabolomics, and proteomics are coming down in price faster than the famous Moors law that has driven computer improvements. These tools are beginning to allow us to understand the biological variation that makes up each of us. This is the technology I used at ALS TDI; the organization I founded, to help learn about the early changes in ALS. This emerging technology needs to be met with well-measured human outcomes.

PatientsLikeMe is working to build that network. Our goal is to be a virtual global registry with millions of individuals sharing health information, translated into every language and normalized to local traditions fully integrated into the medical system so it’s part of care and incorporates information from the electronic medical record, imaging, diagnostics and emerging technologies for interrogating biology.  We are doing this because to understand the biology of disease we needed to understand the experience of disease with the patients as true research partners.

This isn’t just about integrating biological methods to forge discovery. You can’t just consider the science; you also have to consider the person. No two health journeys are exactly the same. With integrated biology, you have to look at the whole person: their social interactions, socioeconomic status, comorbities, environmental impacts, lifestyle factors, geographical location, etc. To accurately model a condition like ALS, or any of the other 2,300 conditions that PatientsLikeMe members are living with, we need to understand everything that can impact progression. We need to use those real-world patient experiences to inform and improve the drug discovery process.

There is much that needs to be solved to move from our current siloed approach to the integrated one and we have had the privilege of being involved in one of the most innovative. Orion Bionetworks brought together leaders from across the MS Field to develop an integrated model of the disease and they are now moving forward with an even more ambitious project.

They’re using computational predictive modeling to bring together different scientific methods and big patient data to find treatments that work and biomarkers that measure them to the people that need them faster. Said differently, they are hacking their way to treatments, because that’s the only way it’s going to work.

They’ve already got a validated model: Orion MS 1.0. And now they want to develop a new Orion MS 2.0 model. Learn more about their #HackMS campaign and how you can help.

We are highlighting Orion here because what they are doing is so innovative and worthy of support. I donate to ALS TDI, the institution I founded, because I believe in the mission and their approach. I also have donated to Orion because if we need to do anything in discovery we need to support the people that are trying to do it differently. What they are proposing is so innovative and powerful in its scale that it has the potential to redefine how we understand and treat MS. That’s why we are partners with them and it’s how we meet our responsibility to our MS patients to use their data for good.

PatientsLikeMe member JamesHeywood

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The Theory of Everything

Posted November 6th, 2014 by

Between the Ice Bucket Challenge and movies like “You’re Not You” (about a classical pianist who is diagnosed with ALS), there has been a ton of awareness going on for ALS, with many efforts focused on the personal stories of people living with the neurological condition. And this month, ALS is being spotlighted again in a biographical movie coming out very soon.

“The Theory of Everything” is about the life of renowned physicist Stephen Hawking, who has been living with ALS since the 1960s. Despite being given a grim diagnosis, he defied all odds and became one of the leading experts on theoretical physics and cosmology. Stephen Hawking’s story reminds us of the reality of ALS, but is also an inspiration to all who are living with motor neuron disease.

The movie premieres on November 7th in the U.S. – check out the trailer below.

 

As many out there might already now, movies like “You’re Not You” and “The Theory of Everything” hit close to home for the PatientsLikeMe family. In 1998, Stephen Heywood, the brother of our co-founders Ben and Jamie, was diagnosed with ALS. Their experiences – as a patient, as caregivers, and as a family led to the beginning of the online community patientslikeme.com.

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Jamie delivers keynote presentation at DIA 2014

Posted October 7th, 2014 by

Our co-founder, Jamie Heywood, recently traveled to San Diego to receive the Drug Information Association’s (DIA) 2014 President’s Award for Outstanding Achievement in World Health. With the award in his hand and speaking to everyone who was attending the event, he accepted it on behalf of the quarter million PatientsLikeMe members (this is for all of you!).

During the DIA’s 50th annual meeting, Jamie gave the keynote address, and he touched upon his personal journey in the world of healthcare and patient-reported data. He spoke about his brother, Stephen Heywood, who passed away from ALS in 2006, and how Stephen inspired the creation of the ALS Therapy Development Institute (ALSTDI) and PatientsLikeMe. Jamie also shared about “healthspan” and the potential that personal health data has to change the way we look at treatments and research. But that’s not all – watch the video below to hear everything Jamie said.

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Throwback Thursday: Jamie talks about the future of medicine

Posted September 4th, 2014 by

It’s Throwback Thursday, so today we decided to share a talk our founder, Jamie Heywood, gave at the Government 2.0 Summit back in September 2009. He spoke about how we can better answer this question for patients:  “Given my status, what is the best outcome I can achieve and how do I get there?”  Watch what else he had to say below:

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PatientsLikeMe (mid-year) news report

Posted August 8th, 2014 by

 

We’re halfway through summer here at the PatientsLikeMe Boston office, and it’s been a busy 2014 so far – from the launch of the Data for Good campaign to new collaborations with One Mind and Genentech. In case you missed anything, here are some of the highlights:

In the news

Innovators in Health Data Series: No Data About Us Without Us
(Health Data Consortium)

10 Lessons From Empowered Patients
(US News)

PatientsLikeMe Offers Three Services for Pharma and Researchers
(Applied Clinical Trials)

Speaking the Patient’s Language
(Hospitals & Health Networks)

Straight talk with…Jamie Heywood
(nature.com)

Social Media Site Connects Patients Suffering From Similar Illnesses
(KPBS)

A listening cure: PatientsLikeMe gives patients voice in clinical trial design
(TED Fellows)

For more PatientsLikeMe media coverage, visit our Newsroom.


Genentech and PatientsLikeMe enter patient-centric research collaboration

Posted April 7th, 2014 by

Companies Sign Multi-Year Services and Data Subscription Agreement
With Initial Focus on Oncology

CAMBRIDGE, Mass. — April 7, 2014 — PatientsLikeMe announced today a five-year agreement with Genentech, a member of the Roche Group (SIX: RO, ROG; OTCQX: RHHBY), to explore use of PatientsLikeMe’s global online patient network to develop innovative ways of researching patients’ real-world experience with disease and treatment. The agreement is the first broad research collaboration between PatientsLikeMe and a pharmaceutical company and provides PatientsLikeMe the opportunity to expand its patient network in oncology.

“We envision a world where patient experience drives the way diseases are measured and medical advances are made. Genentech’s leadership and commitment to this mission brings us closer to having patients at the true center of healthcare,” said PatientsLikeMe Co-founder and Chairman Jamie Heywood. “With Genentech we can now embark on a journey to bring together many stakeholders across healthcare and collaborate with patients in a new way.”

“At Genentech, we come to work every day with the goal of transforming patients’ lives. The collaboration with PatientsLikeMe will allow us to learn more from patients with serious diseases, and better integrate their insights into our decision-making,” said Bruce Cooper, M.D. senior vice president, Medical Affairs, Genentech. “We hope our participation will encourage broader engagement of others involved in the delivery of healthcare and support a stronger voice for patients.”

The five-year agreement provides Genentech the opportunity to utilize PatientsLikeMe’s Global Network Access, a new service for pharmaceutical companies that delivers a range of data, research and tools. The service includes:

  • Access to PatientsLikeMe’s network to enable cross-sectional research and broader discovery of patient insights.
  • Enhanced customized research services and capabilities.
  • Focused research projects to evaluate and develop new medical evidence, measures and standards of health.
  • Access to PatientsLikeMe’s clinical trial awareness tool, which allows patients to learn about clinical trials.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 250,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 40 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

About Genentech
Founded more than 35 years ago, Genentech is a leading biotechnology company that discovers, develops, manufactures and commercializes medicines to treat patients with serious or life-threatening medical conditions. The company, a member of the Roche Group, has headquarters in South San Francisco, California. For additional information about the company, please visit http://www.gene.com.


PatientsLikeMe launches “Data for Good” campaign to encourage health data sharing to advance medicine

Posted March 10th, 2014 by

Public Service Announcement-Style Video Calls Patients to
“Donate Your Data for You. For Others. For Good”

CAMBRIDGE, MA – March 10, 2014 – Today, PatientsLikeMe kicks off a new campaign promoting the value of sharing health information to advance research. In a series of public service announcement-style videos, the company highlights a movement called “data for good,” which underscores the power of donating health data to improve one’s own condition, help others and change medicine.

“This year marks the 10-year anniversary of when our co-founders first introduced the idea that openness in healthcare is a good thing, and should be encouraged and celebrated,” says Michael Evers, Executive Vice President of Marketing and Patient Advocacy at PatientsLikeMe. “The ‘data for good’ campaign is our way of tipping our hats to the massive amounts of data that our members have shared to date. It’s also meant to inspire more people to contribute their experiences to accelerate research.

In the video series, PatientsLikeMe co-founder Jamie Heywood walks people through the journey of being diagnosed with a life-changing condition and frames the underlying problem in creating a patient-centric healthcare system. He then asks everyone to participate in a movement around health data donation – “join us in this amazing journey to make your data, your experience drive medicine”.

This campaign launches on the heels of a recent paper published by the Institute of Medicine (IOM) highlighting a PatientsLikeMe survey focused on people’s willingness to share health information to change medicine.  According to survey results published in the paper, 94% of U.S. adult social media users with a medical condition agree with sharing their health data to help patients like them and should be used to improve the care of future patients.

“Sharing helps me track important health information and improve research about this disease. If I am willing to be transparent, hopefully others will be inspired to do the same,” says Starla Espinoza, a member of PatientsLikeMe since 2008, joining just months after her multiple sclerosis diagnosis. Starla represents one of more than 250,000 members who are donating their disease data to research on PatientsLikeMe. To date, the community has contributed more than 21 million structured data points about their disease experiences including treatment and symptom reports, demographic information, health outcome surveys, lab data and more. In a recent study focused on sleep issues, PatientsLikeMe was able to pull more than 5-years worth of data to analyze from its platform – including over 184,000 symptom reports previously shared by 65,000 chronically ill patients. The company then ran an additional survey to collect more data and received 5,000+ responses in less than two weeks.

PatientsLikeMe’s “data for good” campaign will blanket all of its social media channels and invite people to join the movement (#dataforgood).  “Your data has a heartbeat that gives new life to medical research and a better future to someone like you,” says Heywood.

Anyone can join PatientsLikeMe and share their experiences to help others while helping themselves. To learn more, go to www.patientslikeme.com/dataforgood.

 

About PatientsLikeMe

PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 250,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 40 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.


A Live Online Event: The extended effects of sleep deprivation

Posted November 4th, 2013 by

Recently, PatientsLikeMe co-founder Jamie Heywood and the member community were featured on TEDMED’s blog, and we’re happy to share the post with you this morning. In case you didn’t know, TEDMED is a “multi-disciplinary community of innovators and leaders who share a common determination to create a better future in health and medicine.” (Check out their website here.) Coming up this Thursday, Jamie is going to be part of a live online conversation, talking about chronic illness and it’s impact on sleep. It’s a free event that anyone can join, so we hope to see you there.

Here’s what’s featured on TEDMED’s blog:

The more we know about the physiological effects of sleep deprivation, the less we seem to know about its prevalence, diagnosis and effects on our well being.

The online network PatientsLikeMe recently conducted a survey of more than 5,200 members — people with life-changing health conditions — about sleep, which revealed that most respondents think they have a sleep problem, and have suffered for a year or more.

In fact, a quarter of those said that they rarely get a good night’s sleep. Yet only a small percentage had actually been diagnosed with insomnia. The effects of sleep deprivation, meanwhile, affected their emotional well-being and relationships, and led to dangerous behavior when driving.

Why would sleep loss in what would seem to be an obviously affected population — the chronically ill — go under-diagnosed, and how much do their conditions affect their sleep, and vice versa? What factors are to blame for their sleep loss, and how can we better quantify and treat an issue with such complex causes? Join our live online conversation this Thursday at 2pm ET to discuss the issue and to hear more surprising results from the PatientsLikeMe survey. Our special guest is James Heywood, PatientsLikeMe’s co-founder and director.


PatientsLikeMe Unveils New Tool to Match Patients with Clinical Trials Worldwide

Posted March 13th, 2013 by

Launch at European NHS Healthcare Innovation Expo Comes as PatientsLikeMe Chairman Calls for Revolution in Disease Measurement

CAMBRIDGE, Mass. —  — 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.

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 policy analysis for improving health care in the UK. Heywood returns to London tomorrow to speak on the Expo’s Masterclass Stage about the importance of measurement in building a learning health system.

In his Nuffield speech, Heywood called for a “revolution in measurement,” or what he calls “measurement-based medicine.” He adds, “We should measure the severity of each condition and its impact on the patient. The measurement should support the patient in life choices, clinicians in care choices and researchers in learning what’s effective. And every patient should be measured as part of the care process to the degree appropriate for the severity of their condition, so that their experience can be used to guide the next patient.”


Creating a Revolution at the Nuffield Trust Health Policy Summit 2013

Posted March 11th, 2013 by

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

Posted February 28th, 2013 by

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.

PatientsLikeMe Employees Raising Their Hands for Rare Disease Day 2013

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 for patients with alkaptonuria (AKU), the first genetic disease discovered.


What Is Health?

Posted February 20th, 2013 by

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.

Click on this screenshot to begin the slideshow presentation.

*After clicking the image above, select the “08:45” link to your left to start the presentation.


Innovating Healthcare Through Shared Patient Knowledge

Posted December 12th, 2012 by

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.