Ben Heywood

PatientsLikeMe Co-founder Ben Heywood reflects on a recent visit from Dr. Jill Biden

Last month, PatientsLikeMe was honored to host a special visitor — Dr. Jill Biden was in town as part of the Cancer Moonshot Initiative announced by President Obama in his 2016 State of the Union Address. She made time to stop by our office to learn more about how PatientsLikeMe works and how members use the site to manage their health and improve outcomes. During her visit, Dr. Biden was greeted by Co-founder Ben Heywood, who introduced her to some of the folks behind the scenes here at PatientsLikeMe. Ben sat in on a roundtable discussion with Dr. Biden and four patients from our community — Phyllis, Jackie, John, and Laura. Here’s what he had to say about what the experience meant to him and PatientsLikeMe… PatientsLikeMe was founded on a simple idea: when patients connect to share their experiences, they can learn from each other how to better manage and treat their disease, and improve their outcomes. We’ve been honing the way we help our members do this for over a decade now, but Dr. Biden’s visit last month was external validation of this simple idea inspired by my brother Stephen’s ALS — and the not-so-simple work that our …

PatientsLikeMe Co-founder Ben Heywood reflects on a recent visit from Dr. Jill Biden Read More »

You helped us reach our goal for #24DaysofGiving!

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

RWJF Awards Grant to PatientsLikeMe to Develop New Measures for Healthcare Performance

Patient Network to Work with the National Quality Forum to Ensure Patients Drive Healthcare Value   CAMBRIDGE, MA., December 8, 2015—PatientsLikeMe has been awarded a $900,000 grant from the Robert Wood Johnson Foundation (RWJF) to help jumpstart changes that will amplify the patient voice in the measurement of healthcare performance. A portion of the grant funds a collaboration between PatientsLikeMe and the National Quality Forum (NQF) to develop, test and facilitate the broader use of patient-reported outcome measures (PROMs) to assess patient-reported health status. While PROMs have been used in clinical research, they are rarely used in routine clinical care to assess provider performance. In such settings, performance is primarily assessed by what was done to the patient (using process measures) and what happened to the patient (using clinical outcome measures), but not always by what may be most important to the patient. The grant comes as value-based purchasing is gaining ground in both the public and private sectors, with the Centers for Medicare & Medicaid Services (CMS) setting aggressive targets for linking performance related to quality, value and patient-centered care to payment. “Measuring what is relevant, useful and actionable for patients has never been more important,” said PatientsLikeMe Co-founder and …

RWJF Awards Grant to PatientsLikeMe to Develop New Measures for Healthcare Performance Read More »

The Theory of Everything

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 …

The Theory of Everything Read More »

A new collaboration and the work ahead: An interview with PatientsLikeMe Co-founder and President Ben Heywood

Earlier this week, PatientsLikeMe announced a five-year collaboration with Genentech. Our goal? To bring your experience – the patient experience – to a company that wants to learn more from the people who are living with serious diseases, and to better integrate your insights into their decision-making as they develop new medicines. PatientsLikeMe Co-founder and President Ben Heywood talks more about the work ahead. So, why Genentech? What do you hope to achieve through this partnership? Genentech is a leading biotech company and an acknowledged leader in oncology (which is where our initial focus will be). We spoke with their teams for quite some time before embarking on this collaboration and I have to say that we just really like their approach. We’re very much aligned in our goals of defining a more patient-centric approach to research, development, and care delivery. Their goal in working with us is to explore the use of our PatientsLikeMe network to develop innovative ways of researching peoples’ real-world experience with disease and treatment. I think we also hope and expect this collaboration will encourage broader engagement of others involved in the delivery of healthcare to support a stronger voice for patients like you. How …

A new collaboration and the work ahead: An interview with PatientsLikeMe Co-founder and President Ben Heywood Read More »

As 2013 winds down… Part II

When 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… worked with the Alkaptonuria (AKU) Society to create the first open registry for AKU patients met up with four members at the World Parkinson’s Conference to learn more about their experiences face to face collaborated with the U.S. Department of Veterans Affairs’ Epilepsy Centers of Excellence (ECoE) and biopharmaceutical company UCB on a study to better understand what factors improve health outcomes for veterans living with epilepsy showed how we can get the patient voice front and center during Sally Okun’s TEDMED talk partnered with Aetna to help their members improve the way they live with various health conditions created the world’s first open research platform with an awarded grant of $1.9 million from The Robert Wood Johnson Foundation (RWJF) brought the …

As 2013 winds down… Part II Read More »

PatientsLikeMe in real life: Reporting back from RARE Patient Advocacy Summit

I was in Newport Beach, CA with one of our founders Ben Heywood, Brad Gescheider from partner marketing, and 125+ caregivers, researchers, patients, and advocates—including a member of PatientsLikeMe! MS member since 2010 slowmo_tam joined me for a day full of tips on patient advocacy, empowerment, and collaboration at the RARE Patient Advocacy Summit. Ben was on a panel discussion about connecting communities online, which was a hot topic of the day, along with patient registries, and putting patients and their families first. @bheywood joined Kyle Brown of @patientregistry, @ThePatientsSide of @caresync, and @bar2bar2 to share about how open and patient-centric registries with information that all stakeholders care about—physicians, patients, researchers, caregivers—are better for research. Partnering expands resources to support a robust and large registries, and listening to what patients and families are saying creates a better set of information. Here’s a cool doodle from @dianedurand with a summary of the panel: Collaboration is not only key when it comes to open registries, we learned on another panel with @billstrong of @gsfoundation, John of @Child_Neurology, @keeganj of @fpwr, and Sue of @TaySachs. Collaboration is also important for nonprofits and people thinking about starting a nonprofit. It’s not a zero sum game: when nonprofits collaborate, …

PatientsLikeMe in real life: Reporting back from RARE Patient Advocacy Summit Read More »

The Open Research Exchange- A talk with Paul Tarini and Ben Heywood

Founded on a philosophy of “openness,” PatientsLikeMe aggregates patient-reported data from over 200,000 members on 2,000 diseases, analyzes them and shares the results with healthcare and life science companies to accelerate research and develop more effective treatments. With support from the Robert Wood Johnson Foundation, we’re now building the Open Research Exchange (ORE) so that researchers, clinicians, academics and patients can collaborate to put patients at the center of the clinical research process. ORE will be the hub where we can work together to develop new health outcome measures and increase our collective understanding of disease – faster than ever before. Hear RWJF Senior Program Officer Paul Tarini and PatientsLikeMe Co-Founder and President Ben Heywood talk about ORE. Podcast Powered By Podbean

PatientsLikeMe creates largest open registry of IPF patients in the world

Community One of Website’s Fastest Growing; Reveals Real-World Picture Of Daily Life With the Rare Lung Disease CAMBRIDGE, Mass.— August 22, 2013—In a few short months, PatientsLikeMe has created the largest open registry of idiopathic pulmonary fibrosis (IPF) patients online, and some of the most current patient-reported data on the disease. The information the community has shared is providing new clues about the condition and giving a rare look into what it is like to live daily with a disease that has no known cause or cure. According to the National Institutes of Health, pulmonary fibrosis causes scarring in deep lung tissue over time, making it harder for the lungs to move oxygen into the bloodstream. Cases where the cause of the disease is unknown are called IPF and usually affect middle-aged and older adults, more typically men, and an estimated 100,000 people in the United States. The company’s focus on IPF accelerated earlier this year when it announced a collaboration with Boehringer Ingelheim to enhance its IPF patient community. Now more than 900 IPF patients use PatientsLikeMe to monitor their health and share information about their experiences with the condition. They can also connect with others like them and …

PatientsLikeMe creates largest open registry of IPF patients in the world Read More »

Raising awareness for amyotrophic lateral sclerosis

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.   You 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 …

Raising awareness for amyotrophic lateral sclerosis Read More »

Scroll to Top