Jamie

#NotAlone: On PatientsLikeMe, no one is alone

Our co-founder Jamie Heywood calls it “the big idea my brother inspired.” A community of people learning from each other’s shared health experiences, connecting with people who get what they’re going through, and tracking their journeys to inform new research and help others understand what might work best for them. That is PatientsLikeMe, and that is what Stephen Heywood inspired. Today, more than 350,000 members are part of the community, and through learning, connecting and tracking, they are #NotAlone. Over the next few weeks, we’re launching the #NotAlone campaign that’s all about how members continue to learn from and support one another through life-changing conditions. What can you expect to see from #NotAlone? We’ll be featuring some inspirational stories to show how members have felt less alone on their journeys. Here’s a preview into the #NotAlone experiences of Letitia, Nola, and Geof: After Letitia learned about an epileptologist on the site and discovered she was a perfect candidate for surgery, she’s been seizure free for 3 years. When Nola’s multiple sclerosis kept her from accessing her shower, Gary, a member she connected with in the forum, stepped in to help from 3,000 miles away. Geof uses Adderall to combat multiple …

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What can you do to challenge ALS in May?

It’s been 23 years since the U.S. Congress first recognized May as ALS Awareness Month in 1992, and while progress towards new treatments has been slower than we’ve all hoped,  a lot has still happened since then. In 1995, Riluzole, the first treatment to alter the course of ALS, was approved by the FDA. In the 2000s, familial ALS was linked to 10 percent of cases, and new genes and mutations continue to be discovered every year.1 In 2006, the first-of-its-kind PatientsLikeMe ALS community, was launched, and now numbers over 7,400 strong. And just two short years later, those community members helped prove that lithium carbonate, a drug thought to affect ALS progression, was actually ineffective. This May, it’s time to spread awareness for the history of ALS and share everything we’ve learned to encourage new research that can lead to better treatments. In the United States, 5,600 people are diagnosed with ALS each year,2 which means that well over 100,000 have started their ALS journey since 1992. And in 1998, Stephen Heywood, the brother of our co-founders Ben and Jamie, was also diagnosed. They immediately went to work trying to find new ways to slow Stephen’s progression, and after …

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Hacking our way to new and better treatments with integrated biology

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 …

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2014 recap – part II

2014 was full of new partnerships, research initiatives and PatientsLikeMe milestones (we just celebrated our 10th anniversary last week!), and in 2015 we’ll continue to put the patient first in everything we do. At PatientsLikeMe Everything we do starts with the community that shares their health data and experiences, which enables innovation and change in healthcare, for good. Here’s just some of what everyone helped accomplish in 2014: We formed our first-ever, patient-only Team of Advisors to give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients. Three new advisors were named to the Scientific Advisory Board for the Open Research Exchange (ORE), a platform where researchers design, test and share new measures for diseases and health issues. The board was formed in 2013 to lend scientific, academic, industry, and patient expertise to ORE The community celebrated the sixth anniversary of PatientsLikeMeInMotion™. We worked with Tam, a PatientsLikeMe MS member, to develop the first-ever patient led health measure for chronic pain on the Open Research Exchange. She’s going to start testing the measure in January and it will be available in the ORE library in 2015. Data for Good …

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Seeing [MS]: The invisible symptoms – hot and cold

Dimitri is living with multiple sclerosis (MS), and he experiences dramatic changes in his body temperature every day. These swings can aggravate his other symptoms and leave him feeling suffocated. As he puts it, “a single bead of sweat can bring me to my knees.”   You are now seeing hot and cold Photographed by Jamie MacFayden Inspired by Dimitri’s invisible symptoms He worked with photographer Jamie MacFayden to portray his hot and cold sensations as part of the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] campaign, which we also posted about on the blog in July (blurred vision) and August (pain). It’s all about raising awareness and showing everyone the invisible symptoms some people are living with because of their MS. Stay tuned for more Seeing [MS] posts. Share this post on Twitter and help spread the word for MS.

Jamie delivers keynote presentation at DIA 2014

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. Share this post on Twitter and help spread the word.

Throwback Thursday: Jamie talks about the future of medicine

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: Share this post on twitter and help spread the word for good.

PatientsLikeMe (mid-year) news report

  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.

Speaking up for hope during ALS Awareness Month

May is just a few days away, and we wanted to get a jump-start on spreading the word for Amyotrophic Lateral Sclerosis (ALS) Awareness Month. As many out there might know, PatientsLikeMe was founded on the life experiences of brothers Stephen, Ben and Jamie Heywood. In 1998, Stephen was diagnosed with ALS and his brothers went to work trying to find new ways to slow his progression. But their trial and error approach just wasn’t working, and so they set out to find a better way. And that’s how in 2004, PatientsLikeMe was created. If you don’t know the story, you can watch the feature documentary of the family’s journey, called “So Much So Fast.” ALS is considered a rare condition, but it’s actually more common than you might think – in the United States, 5,600 people are diagnosed with ALS each year, and as many as 30,000 are living with the condition at any given time.1 ALS affects people of every race, gender and background, and there is no current cure. Even before PatientsLikeMe, Jamie started the ALS Therapy Development Institute (ALS TDI), an independent research center that focuses on developing effective therapeutics that slow and stop ALS. Now, …

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Genentech and PatientsLikeMe enter patient-centric research collaboration

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, …

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