8 posts tagged “Jamie Heywod”

One Mind and PatientsLikeMe join forces to help people with post-traumatic stress and traumatic brain injury

Posted June 12th, 2014 by

Collaboration Will Uncover Real-World Experiences, Generate Patient Data That Improves Daily Living and Overall Understanding of Conditions

SEATTLE, WA—June 12, 2014—One Mind and PatientsLikeMe announced a new multi-year collaboration to help the millions of people worldwide who are experiencing post-traumatic stress (PTS), traumatic brain injury (TBI), or both. The two organizations will work together to expand and enhance the PatientsLikeMe online registry experience for people with these conditions, to provide better resources for day-to-day living, and to capture more patient-reported data for research.

Building on the headway One Mind has made in seeking out real solutions for patients, One Mind CEO, General Pete Chiarelli, U.S. Army (Retired), said the collaboration will address longstanding issues for people with all forms of PTS and TBI. “You only have to look at the way we diagnose and treat people to know that we’re decades behind in our understanding of these conditions. We have an amazing ability to save soldiers on the battlefield, but we don’t do a good job addressing their invisible wounds. And we prescribe a mix of off-label drugs because nothing has been developed specifically for their condition. We need to look to the future to improve outcomes and lives, and this innovative partnership will do just that.”

Almost 8 percent of adult Americans will experience PTS (including the disorder known as PTSD) at some point in their lives, according to R.C. Kessler’s findings from The National Comorbidity Survey (NCS) Report. In addition to veterans, victims of sexual assault and others who have experienced a traumatic event may develop PTS. TBI is broadly defined as an alteration in brain function or pathology caused by an external force that can occur at home, at work, during sports activities, or on the battlefield. In 2009, the Center for Disease Control and Prevention reported that there were at least 2.4 million emergency department visits, hospitalizations, or deaths related to TBI across the country, and that the leading causes of TBI are accidents, sport-related injuries or other incidents.

“We are both of one mind when it comes to the challenges of living with and researching these understudied and largely misunderstood conditions,” said PatientsLikeMe Co-founder and Chairman Jamie Heywood. “Our partnership with One Mind and the individuals dealing with PTS and TBI will provide insights about effective treatments from people in the real world, and drive new understanding about gaps in care. It will also provide a new resource where people are empowered to help themselves as they learn how to live better with their condition.”

One Mind is also supporting multi-center clinical studies called TRACK-TBI and CENTER-TBI, which will follow thousands of TBI patients over three years. Both studies enroll patients within 24 hours of their injury and are focused on improving treatments through developing new diagnostics tools such as imaging protocols and biomarkers. Heywood added that in the future, the patient-reported data from the TBI community on PatientsLikeMe may be combined with the TRACK-TBI and Center-TBI data, as well as other studies, to create a rich and unprecedented set of information about people’s real-world experiences.

One Mind and PatientsLikeMe are actively seeking nonprofit and other partners to grow the online community and learn together about people’s real-world experiences. People living with any form of PTS or TBI can join fellow members of the PatientsLikeMe community today to become early users of the site and provide feedback on future customizations for the community. Go to www.patientslikeme.com for further information.

About One Mind
One Mind is an independent, 501(c)(3) non-profit organization dedicated to benefiting all affected by brain illness and injury through fostering fundamental changes that will radically accelerate the development and implementation of improved diagnostics, treatments, and cures; while eliminating the stigma. One Mind believes in open science principles and creates global public-private partnerships between governmental, corporate, scientific, and philanthropic communities. Visit us at www.1mind4research.org or follow us via Twitter or Facebook.

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 50 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.



ONE MIND                                                              
Brooke Whitney
Office: +1 206.946.1768

Margot Carlson Delogne
Mobile: +1 781.492.1039

As 2013 winds down… Part II

Posted December 30th, 2013 by

PatientsLikeMe Employees Raising Their Hands for Rare Disease Day 2013When we kicked off 2013 back in January, we shared that what inspires everyone at PatientsLikeMe to live better is YOU. We also renewed our promise to continue putting patients first, and a couple days ago we posted on the blog about just some of  the ways the community has continued to change healthcare for good by adding their voices to real-time research and sharing personal health experiences.






In just this last year, PatientsLikeMe…

There’s even more you can check out in our newsroom too.

Also on the blog…

And last, but not least…

the PatientsLikeMe website got a makeover in November. Haven’t seen it yet? Take a short, one-minute virtual tour with Kim Goodwin, our Vice President of User Experience.

From everyone at PatientsLikeMe, thank you and Happy New Year!

Stress and sleep- PatientsLikeMe co-founder Jamie Heywood’s interview on the TEDMED blog

Posted November 6th, 2013 by


Our co-founder Jamie Heywood was just interviewed for the TEDMED blog. Check it out! He talks more about the recent PatientsLikeMe sleep survey and some new results that show how stress can impact our sleeping habits.




Here’s what’s posted up on the TEDMED blog…

A new survey suggests patients’ sleep problems often go untreated

Most people with a health condition have a hard time sleeping well.  And one of the overwhelming reasons why sleep is difficult?  They’re stressed.

So say the results of a recent survey of more than 5,200 patients by the online network PatientsLikeMe. The findings make sense, right?  Yet the issue of sleep deprivation can be hard to spot and quantify among patients already suffering from other ills. Its causes are complex and varied, including factors like anxiety, pain and depression. And our specialty-centric medical system makes it difficult to design a comprehensive treatment.

PatientsLikeMe has been studying sleep issues for more than five years now, amassing patient-specific sleep data representing the experiences of 65,000 patients.  The recent survey revealed that most respondents – 64% – say they think they have a sleep problem, with over half saying they’d suffered for a year or more.

“While a common factor among the chronically ill, sleep problems are not generally on the clinical visit menu, even in questions where sleep is really critical like epilepsy,”  says Jamie Heywood, PatientsLikeMe’s co-founder and chairman and a TEDMED 2009 speaker. “There are a lot of things we think we know in medicine, but they aren’t measured in any way that allows you to do comparisons.”

Looking at multifaceted factors among a large population is one of the biggest challenges in medicine, he adds.

“Medicine stores data in largely a storytelling or narrative format, so when you talk to an endocrinologist, for example, and you ask them if their patients have sleep problems, they say a lot of them do. But they would not be able to say quantitatively how many do, or if there are treatments that are more or less effective for that population.

“We built PatientsLikeMe to advance understanding of the many variables of health across conditions” Heywood says. “Because we run these cross-condition studies, we can create much greater value than the current silo-based model creates.”


Stress Contributes to Sleep Problems, Makes Normal Functions Difficult

Stress was reported as one of the biggest sleep loss factors – again, a likely outcome but one with a surprising impact.  Of survey respondents who reported sleep problems of at least mild severity, 89% of women and 84% of men said their sleeping problems are caused by stress or anxiety.  And those with stress-induced sleeping problems reported that it had a significant impact on their ability to work.  (Click here for the data.)

The study aimed to measure sleep quality against the holistic backdrop of a patient’s life environment, such as work and living conditions. Going forward, PatientsLikeMe also plans to look more closely at data relating insomnia to chronic fatigue, depression, pain, and diet, and to delve into nuances such as a patient’s feelings of empowerment and how it may relate to his or her symptoms.

“These are important variables about how people live with disease,” Heywood says.  “Every one of these is a complicated sub-domain where understanding the compounding factors and context is extremely important. For us to move into this next generation of personalized medicine, we first have to understand mathematically what the human condition is.”

PatientsLikeMe also launched the Open Research Exchange this summer, an online platform to help researchers design, test and share new ways to measure diseases and health issues, and to open the research process to patient input, including developing and critiquing questions.

A traditional research model with a principal investigator collecting subjects and restricting access leads to conditions without good outcome measures, particularly those for rare diseases, Heywood says. Instead, Open Research Exchange uses crowd-sourcing concepts to help researchers develop new health outcome measures and more fully understand diseases in a patient-centered way.

“Look at the BECK Depression Inventory – that was developed in just over a week.  The idea that our whole understanding of depression is based on something that was developed in a week without patient input, and hasn’t evolved since, is just wrong. We have patients tell us all the time how to make our scales better, and now we’re going to give them the ability to do it,” Heywood says.

Jamie Heywood will be a participant at this week’s live online Google+ Hangout, discussing the causes and effects of sleep deprivation. It’s tomorrow at 2PM Eastern. Click here for more information and to register.

PatientsLikeMe co-founder Jamie Heywood named to PharmaVoice Top 100

Posted August 5th, 2013 by

An MIT-trained mechanical engineer, Jamie entered the field of translational medicine when his 29 year old brother Stephen was diagnosed with ALS, or Lou Gehrig’s Disease. Today Jamie is a chief scientist and architect for PatientsLikeMe. Described by CNNMoney as one of the 15 companies that will change the world, Jamie co-founded PatientsLikeMe to ensure patient outcomes become the primary driver of the medical care and discovery process. Jamie is also the founder and past CEO of the ALS Therapy Development Institute (ALS TDI), the world’s first non-profit biotechnology company.


And just a few days ago, Jamie was named to the 2013 list of the 100 most inspiring people in the life-sciences industry by PharmaVoice. Here at PatientsLikeMe, our members inspire us every day. Check out the complete article in PharmaVoice, page 77.

Raising awareness for amyotrophic lateral sclerosis

Posted May 1st, 2013 by

May is amyotrophic lateral sclerosis (ALS) Awareness Month. As many out there know, PatientsLikeMe was inspired by the life experiences of Stephen Heywood, who was diagnosed with this serious neurological disease back in 1998. Stephen’s brothers (Ben and Jamie) made many attempts to slow the progression of his condition, but their trial-and-error approach just wasn’t working. They knew there had to be a better way, and in 2004 PatientsLikeMe was created.

Every year, about 5,600 people are diagnosed with ALS in the U.S. It can affect any race or ethnicity and there is currently no treatment or cure that will reverse or even stop its progression.[1] By getting involved, you can help change that.


The ALS Association has put together a terrific calendar of events called “31 Ways in 31 Days.” For each day in the month they’ve created a simple way to get involved and help raise awareness.


TDIYou can also find upcoming awareness events on the ALS Therapy Development Institute calendar. There will be picnics, charity golf tournaments and “The Cure is Coming” 5k and awareness walk. And don’t forget, we’d love to sponsor your run/walk team through our PatientsLikeMeInMotion program. Your whole team will get free t-shirts, a donation and more!

Looking for more info on non-profits during ALS awareness month? There are a bunch of organizations dedicated to the cause. A fellow PatientsLikeMe community member put together a great list in his forum thread Comparison of ALS/MND Organizations.

If you’re living with ALS, find others just like you in our growing community of almost 6,000 ALS patients on PatientsLikeMe. Learn what they’re doing to manage their condition with symptom and treatment reports, and share your own experience with a personal health profile or in the community forums.


[1] http://www.alsa.org/about-als/facts-you-should-know.html

Creating an Open-Access Platform for Patients: An Interview with Jamie Heywood and Paul Tarini

Posted February 25th, 2013 by

RWJF has awarded PatientsLikeMe a $1.9 million grant to create the world’s first open-participation research platform to develop patient-centered health outcomes. The new platform will be linked with the PatientsLikeMe network to help researchers develop health outcome measures that better reflect patients’ experiences with a disease, and assess health and quality of life in ways that matter to patients.

Jamie Heywood, co-founder of PatientsLikeMe, and Paul Tarini, senior program officer of the Pioneer Team at RWJF, share their views on why creating an open-access platform to develop measures that matter to patients could advance meaningful treatments that improve health and advance research.

jamieenviron2013 paul9

Why is this a pioneering project?  What makes it novel?

PT: We see this as an opportunity to help improve the use of real-world data. As we look at the potential power of this data, we are concerned about how hard it is to move it out of the real world and into more formal settings where it can be applied.  Traditionally, data drawn from the day-to-day experiences of people living with disease have been viewed with real suspicion by those working in more formal settings, such as medical practice and research. So the possibility of developing a way to structure data from the real world and validate it solved a number of those problems. Also, the fact that PatientsLikeMe was willing to largely open-source the creation and availability of the outcome measures that would get produced was a very important public good the Foundation wanted to pursue.

JH: We have been thinking for a long time about how we can really shift the way health care operates into a new paradigm – a “learning health system model” that continuously measures and improves. PatientsLikeMe is helping to build this model by developing a set of integrated measures that characterize the real world state of each patient. What is novel about patient-reported outcomes is we are harnessing the best ideas for measuring each condition through a crowd-sourcing, open-source approach. This will dramatically accelerate our understanding of human health. If we can create a shared partnership with patients and researchers, it will break down a lot of silos, barriers and cost inefficiencies so we can improve and increasingly use outcome measures as a de-facto practice.  Physicist Lord William Kelvin famously said “to measure is to know.” Today we use outcome measures to understand what we practice, not to determine what we should practice. That is backwards. We want to reverse the system so that the outcome becomes the measure of medicine. If we can develop a measurement system that is openly shared and centered on the patient, we will move our knowledge forward and bring medicine to a new and important level.

How will patient-reported outcomes fill the vacuum of “measurement in medicine”?

PT: This is a critical point. We need health outcome measures that hold meaning for patients in contrast to those that are developed by providers or researchers to help them do their jobs. We have seen time and time again that there is not a perfect overlap between the interest of providers, patients, or researchers.  If patients start driving and defining what outcomes are most important to pursue, then we believe we will see some real potential for changes in clinical protocols and research agendas, which could lead to dramatic improvement in health outcomes.

JH:  Like all complex problems, there’s no simple answer to this question. Many measurements are copyrighted, expensive and unavailable for clinical use, or they’re not designed to be meaningful and useful for patients. You can find some instances where measures are used effectively overall but in general they are not part of healthcare. The ability for crowd sourcing to iterate toward measuring what is meaningful and to empower patients with those tools dramatically increases the odds that these measures will be relevant and efficient, and that they’ll be used.

What is exciting and transformative about a project that leverages data in real-world, real-time?

PT: Anybody who is living with a disease spends most of their time living with it in the real world.  They only spend a very small amount of time in a provider setting, yet most of the information we collect traditionally on the status of disease is always collected in those provider settings.  That is such a limited view of what someone is experiencing and how it is affecting their lives. So to be able to get a fuller, richer picture of somebody’s total experience with their particular disease – not just the limited window when they are in a provider’s office – is where new understanding and new knowledge and treatment priorities can emerge.

JH:  My brother Stephen died of ALS (Lou Gehrig’s Disease) when he was 36. When I look back and wonder what might have changed that, and when I think about the tens of thousands of patients who have gone though ALS and tried so many different things to improve their lives, I think of all the knowledge that was lost because the system did not measure or learn. I feel a very keen sense that we continue to throw away information and insights that might lead to new knowledge, and certainly better care.  That experience has made me determined to work toward a world where the next patient who is diagnosed with a disease can make informed choices based on the actual, quantified experience of every patient who has gone before them, and with the best insights of every clinician. Imagine trying to manage your credit cards and bank statements without knowing your balance, or by having to guess the value of each transaction. You would have no idea how to manage your finances. Yet, that’s how we run health care, because we have few meaningful outcomes.

Should patients be excited about this?

PT:  If this is done right–and the measures that get developed are measures that are meaningful to patients–this will give them a way to collect and report on their own experience, which is an important first step. As people begin to do that, patients will begin to see it will change the dynamic they have with their providers. It changes the power of their information and puts them on more equal footing. I also believe there is an altruistic streak that runs through all of us. The opportunity to contribute your information to a larger knowledge enterprise to make it better for others is a pretty powerful motivator for a lot of people.

JH:   We are combining several levels of crowd learning into one integrated system. The PatientsLikeMe system allows for individuals to contribute structured, quantitative knowledge into one model. But what is being added are two powerful new tools.  The first is the ability for patients and researchers to collaborate in the authoring and evolution of the tools.  The second is a real-time feedback mechanism that reviews each instrument for its utility, relevance to the patient, and context. Having a feedback loop so patients can comment and impact the design, coupled with the ability to immediately and rapidly generate significant amounts of quantitative data, is revolutionary. The validity of outcome measures is ultimately driven by their utility to patients, which is a very different concept from the way things work now. This is a disruptive shift.

Why is it important for a foundation to engage in these kinds of relationships at this time?

PT:  The fact that PatientsLikeMe is a for-profit didn’t figure into our analysis on the project’s worth.  The Foundation made its decision based on the merits of what they were proposing and the potential it afforded. For us, the issue is not ‘oh let’s go fund a for-profit’; rather, the issue is whether this is an idea worth funding.

JH: Health care, whether for-profit or nonprofit, is full of silos that prevent the flow of data and information largely to defend existing profit centers. This harms the system and the patient. There are a lot of technologies being developed now that will likely disrupt these silos. The Robert Wood Johnson Foundation deserves a lot of credit for engaging in a dialogue with us and many others to disrupt traditional ways of doing things in health care.  They are looking at these developments in a very strategic and important way to make sure the system is inherently open. What distinguishes PatientsLikeMe is that it is fundamentally voluntary. If we are to succeed, we have to deliver on our commitment to patients to advance understanding of their disease and contribute to the research process. Information networking in health care today is like the beginning of the Internet. It is a great public good that RWJF is thoughtfully working to ensure that this fast-developing network is structured in ways that improve the human condition.

PatientsLikeMe’s Jamie Heywood Talks with INSEAD Knowledge

Posted January 28th, 2013 by

“That’s why we built PatientsLikeMe, to lower the cost of discovering new treatments and to measure and understand disease. Together, this community can help reduce the time to determine what works.”
Jamie Heywood

While attending the 2012 INSEAD Healthcare Alumni Summit in London last fall, PatientsLikeMe Co-Founder and Chairman Jamie Heywood sat down with INSEAD Knowledge’s Editor-in-Chief Shellie Karabell to discuss PatientsLikeMe’s model and mission.  What role does Jamie see PatientsLikeMe playing in the healthcare system?  Why does he feel we are a social networking site only in the secondary sense?  How does privacy factor in to how we collect and share data?  Find out that and much more in this insightful interview and accompanying article.