25 posts tagged “health data”

Another successful 24 Days of Giving!

Posted December 27th, 2016 by

That’s right – thanks to your awesome rallying, we reached our 24 Days of Giving goal again! Together, the PatientsLikeMe community donated a total of 428,459 health data points. We’ll be making a $25,000 donation to Make-A- Wish® Massachusetts and Rhode Island to help fund life-affirming wishes for seriously ill children.

What did the community donate? Check out this graphic for a by-the-numbers view.

 

 

Share this post on Twitter and help spread the word.


PatientsLikeMe Kicks off 3rd Annual “24 Days of Giving”

Posted November 29th, 2016 by

People Living With Chronic Conditions Encouraged to Donate Health Data for 24 Days

November 29, 2016 – CAMBRIDGE, Mass. – Beginning today on #GivingTuesday, PatientsLikeMe is kicking off its third-annual #24DaysofGiving to celebrate “the tradition of generosity.” Over the next 24 days, PatientsLikeMe is asking members to rally together, rethink what it means to give back and donate their health data on PatientsLikeMe.com after donating to their favorite charity or nonprofit. PatientsLikeMe is giving back, as well. During 24 Days of Giving, the company will once again showcase important research that has benefited from patient data in the last year. For every piece of health data shared during 24 Days of Giving, PatientsLikeMe will  make a donation to Make-A-Wish® Massachusetts and Rhode Island, up to $25,000, to help fund life-affirming wishes for seriously ill children.

Since it first launched in 2014, PatientsLikeMe members have donated nearly one million data points about their health during 24 Days of Giving, including 60,000 treatment reports, 218,000 symptom reports and 269,000 health outcomes reports. As a result, over the last two years, a total of $40,000 has been donated to Make-A-Wish Massachusetts and Rhode Island. Through these donations, four wishes have been granted to children in the Massachusetts-Rhode Island area.

PatientsLikeMe is a patient network that aggregates the health data members share so that others can learn more about how to improve their outcomes and contribute data for research. Health data includes information about a disease or condition – how people live with it, what their doctors are doing to treat it, and what it’s like to navigate their health journey. PatientsLikeMe analyzes the donated data to spot trends in specific diseases and works with partners to incorporate patient-reported evidence in their research. Partners can then create new products and services that are more in tune with what patients experience and need.

“Over the past two years of 24 Days of Giving, new and existing members have generously donated their health data for good – whether through their treatment evaluations, symptom reports or other health updates,” said Michael Evers, PatientsLikeMe’s Executive Vice President of Marketing, Technology and Operations. “We hope people will join us again this year, because the data they share on PatientsLikeMe during 24 Days of Giving – and every day beyond – gives others the best information to make more informed health decisions, and could change someone’s life for the better.”

“24 Days of Giving” will be active across PatientsLikeMe’s Twitter, Facebook and Instagram social media channels through December (#24DaysofGiving). Anyone who is living with a chronic condition can create a profile on PatientsLikeMe and start tracking their symptoms, treatments and quality of life for free. Existing members are encouraged to keep their profiles up-to-date or complete a new treatment evaluation. To learn more, go to www.patientslikeme.com.

About PatientsLikeMe 
PatientsLikeMe 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 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 80 research studies. Visit us at www.patientslikeme.com or follow us via our blogTwitter or Facebook.

About Make-A-Wish® Massachusetts and Rhode Island

Make-A-Wish® Massachusetts and Rhode Island grants wishes for children between the ages of 2½ and 18 years of age with life-threatening medical conditions to enrich the human experience with hope, strength, and joy. For a child with a life-threatening illness, a wish fulfilled provides profound joy and lasting hope to keep fighting and dreaming for the future. In its 29-year history, the organization has granted more than 7,500 wishes for children in Massachusetts and Rhode Island. Visit Make-A-Wish Massachusetts and Rhode Island at www.massri.wish.org for more information, to make a donation, or to learn about volunteer opportunities. Find us on Facebook at Facebook.com/MassRIWish, Twitter at Twitter.com/MakeAWishMassRI and Instagram at Instagram.com/MakeAWishMARI.

Contact
Katherine Bragg
kbragg@patientslikeme.com
617-548-1375


At the #24DaysofGiving halfway point, you can help get us to our goal!

Posted December 15th, 2015 by

Just a couple of weeks ago we recognized  #GivingTuesday, a day to celebrate generosity. But this idea of giving back isn’t just about one day – it’s bigger than that. We’re asking you to re-think what it means to give back by donating your health data this December for what we call #24DaysofGiving.

And right now, we’re at the pivotal midway point and we wanted to give you an update – you guys are data donation rock stars! Through the health data that everyone is sharing, you’re helping reach our goal of donating up to $20,000 to Make-A-Wish® Massachusetts and Rhode Island to help fund life-affirming wishes for seriously ill children.

What health data is everyone donating?

At this point in the month, you and your community have already contributed:

  • 17,227 treatment reports
  • 68,518 symptom reports
  • 73,203 health outcomes measures

In total, you’ve donated 280,610 health data points!

The best part is that there’s still a bunch of time left for you to help us reach our goal. Getting started is easy. Just log in, go to your 3-stars page, About Me, or Treatments and do your thing!

If it’s true that you get what you give – let’s keep giving good, together.

Share this post on Twitter and help spread #dataforgood during #24DaysofGiving.


Your data doing good: A collaboration with Walgreens

Posted December 13th, 2015 by

During #24DaysofGiving this December, we’re highlighting all the good your health data is doing within – and well beyond – the PatientsLikeMe website. Here’s another great example. Did you know the side effect data you report on your PatientsLikeMe treatment evaluations is helping pharmacy customers understand how the medications they take may affect them, too?

It started back in February this year when we kicked off a new collaboration with Walgreens, the nation’s largest drugstore chain. The idea was simple; by joining forces, we could help bring your experiences to many more people making treatment decisions. Now anyone researching a medication or filling a prescription on Walgreens.com can see a snapshot of how PatientsLikeMe members have been impacted by that medication, including side effects and their severity. There are currently about 6,000 medications at Walgreens pharmacies where others can learn from your experiences, and the data (de-identified!) is updated daily based on what you report on PatientsLikeMe.

This partnership marks the first time a company has displayed your real-world data on their website. Why did they do it? Because your data and experiences can help patients, wherever they are, understand more about the treatments they’re taking, and make more informed health decisions. Our partners understand and recognize that.

Here’s another reason (one you can probably relate to). To find side effect information for a treatment, you normally have to scour the Internet or read that sheet of paper that gets stapled to your prescription bag. (Does anyone really read that?) But information like that only represents a tiny fraction of the population, usually just a few hundred or at most a few thousand who took part in the clinical trial for the treatment. The thing is, you might be taking the treatment off-label. In fact, more than one in five outpatient prescriptions written in the U.S. are for off-label uses, and 75 percent of these uses have little or no scientific support[1]. This means the treatment may affect people a little bit differently. So having real-world experiences like yours gives a broader picture for people trying, or deciding to try, that treatment.

The next time you record a treatment evaluation, know that you’re doing much more than you think. By sharing information about side effects, you’re making it easier for someone else to make a better decision for them. We’re truly better, together.

Share this post on Twitter and help spread #dataforgood during #24DaysofGiving.

 


[1] Radley DC, Finkelstein SN, Stafford RS. Off-label prescribing among office-based physicians. Arch Intern Med. 2006;166(9):1021-1026. doi: 10.1001/archinte.166.9.1021.


Your data doing good: IPF treatment experiences

Posted December 12th, 2015 by

Every minute of every day, people are sharing their health data on PatientsLikeMe. Some of you are focused on tracking how you’re doing over time. Many want to make sure the next person diagnosed can learn from your experience. All are contributing to the greater good, because what you share helps researchers see what patients really need.

During #24DaysofGiving, we’re highlighting some of the most important things we’ve learned from data that members like you have selflessly shared, and all the good your data donations are doing.

Every year, the Food and Drug Administration (FDA) approves new medications that can help people living with life-changing conditions. But with new treatments come new questions. And that’s exactly what happened at the end of 2014 for people living with idiopathic pulmonary fibrosis (IPF).

IPF is a rare condition that causes scarring in deep lung tissue over time and has no cause or cure, and before October 2014 no available treatment. That’s when two FDA-approved medications for the condition became available, simultaneously. They had the potential to make a difference in the lives of IPF patients, but how could they learn which medication might be right for them? If they started taking one of the new treatments, would they experience the side effects that were reported by the FDA? Would the side effects go away, or get better? In short: were the drugs worth taking?

We set out on a journey with members of the PatientsLikeMe IPF community to get answers from the best source possible—other patients who had already started to take the treatments. We worked together to understand their complete experience, everything from how they learned about the new treatments and if they were hard to access, to their side effects and what might cause them to switch treatments. The data that the community shared (all of it) is helping other members better understand what could work for them.

Here’s just some of what we discovered, and what others are learning, thanks to the data that members donated:

About making choices and getting access
Physician buy-in matters. In fact, physicians were active participants in 60-70% of the treatment decisions IPF patients made. But once they made a choice to begin treatment, patients were challenged to work around obstacles that prevented them from getting access to the treatment, things like how to get reimbursed and even where to fill the prescription.

About the side effects vs. the clinical trial
The overall side effects when first starting the medication were similar. Most patients, between 69-72%, reported ‘none’ or ‘mild’ side effects for one or other treatment. Patients also reported some side effects more often than those patients who were in the clinical trials. For one medication, patients reported higher rates of decreased appetite compared to the clinical trial participants (27% vs. 8%) and sensitivity to sunlight (18% v. 9%).  For the other treatment, patients reported a higher rate of decreased appetite (19% v. 11%) compared to the clinical trial participants.

Switching it up
Most patients, between 55-57%, aren’t sure if they are satisfied with their treatment, but only a small percentage, between 8-10%, report that they are likely to stop taking the medications

There is a lot more to learn here:

We’ll all continue to learn in real time as more and more IPF members share their experiences with the treatments, but the IPF example underscores why giving your data matters so much—to you, to others, and to research. We’re truly better together.

Share this post on Twitter and help spread #dataforgood during #24DaysofGiving.


Christel’s story

Posted December 10th, 2015 by

Last month, we introduced Christel, a member of your 2015-2016 Team of Advisors living with type 1 diabetes. Here she talks about the important role peer support has played in her journey.

Here’s her story:

 
You can see how much good data can do. During the month of December, we’re celebrating #24DaysofGiving. Any data you share on the site will go toward a donation of up to $20,000 by PatientsLikeMe to Make-A-Wish Massachusetts and Rhode Island to help fund life-affirming wishes for seriously ill children.

 

 

Data for you. For others. For good.

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Gus’s story

Posted December 7th, 2015 by

Last month, we introduced Gus, a member of your 2015-2016 Team of Advisors living with ALS. Here he talks about his hope that the data he donates will help not just one person – but many.

Here’s more of his story:

 
You can see how much good data can do. During the month of December, we’re celebrating #24DaysofGiving. Any data you share on the site will go toward a donation of up to $20,000 by PatientsLikeMe to Make-A-Wish Massachusetts and Rhode Island to help fund life-affirming wishes for seriously ill children.
 

 
 
 
Data for you. For others. For good.

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Your data doing good: The POEM Study

Posted December 4th, 2015 by

When you share your health data, we all learn

Every minute of every day, people are sharing their health data on PatientsLikeMe. Some of you are focused on tracking how you’re doing over time. Many want to make sure the next person diagnosed can learn from your experience. All are contributing to the greater good, because what you share helps researchers see what patients really need.

During #24DaysofGiving this December, we’ll highlight some of the most important things we’ve learned from data that members like you have selflessly shared, and all the good your data donations are doing. Here’s a great example: the POEM Study, which showed that the secret ingredient to managing your health may just be patients like you.

PatientsLikeMe was founded on a simple idea: when patients connect with each other and share their experiences, they can learn how to better manage and treat their disease and improve their outcomes. Over the years, members proved this is possible time and again. But would a rigorously-conducted scientific study confirm what we already thought to be true?

Our partner UCB wanted to work with us to find out. They helped to build and grow the epilepsy community on PatientsLikeMe back in 2010.  At the time, they were thinking about patient services that you might not expect a pharmaceutical company to focus on, things like information, advocacy, and education. In 2011, we worked together on a pilot study with people living with epilepsy. We learned that people who joined PatientsLikeMe felt that they better understood their own seizures. They even reported improved adherence to their medications. The results also underscored a significant piece of understanding about this particular population; prior to joining the site, one out of three epilepsy patients had never met another person living with this condition.

As the community grew, so did our understanding of what matters to these patients. Then in 2013, we found another partner who wanted to help create a new study focused on an even more specific group: veterans living with epilepsy, an often isolated and stigmatized part of the community. The question we were trying to answer was this: could a network like PatientsLikeMe, with its epilepsy-specific tools and resources, help those who found out about the site from their doctors improve their ability and confidence to manage their condition?

Along with UCB we collaborated with the VA Epilepsy Centers of Excellence in a six-week study of veterans using PatientsLikeMe. The evidence showed that by sharing their health data and connecting with each other online, these patients’ outcomes improved. The nearly 100 veterans who took part in the study grew more confident that they could take care of themselves, and did a better job of managing their care. The results were published this year in Neurology, a leading scientific journal in the field.

It all started with one partner, one community and a whole lot of data sharing. And now, five years later, there are nearly 10,000 epilepsy patients using PatientsLikeMe and helping one another to live better every day. You are the secret ingredient to helping others better manage their health. Thank goodness it’s not a secret anymore.

Share this post on Twitter and help spread #dataforgood during #24DaysofGiving.


Allison’s story

Posted December 3rd, 2015 by

Last month we introduced Allison, a member of your 2015-2016 Team of Advisors living with bipolar II. She recently opened up in a video about how sharing her data on the site helped her recognize when she might have an episode, and partner better with her doctor to prevent new episodes from happening.

You can see how much good data can do. During the month of December, we’re celebrating #24DaysofGiving. Any data you share on the site will go toward a donation of up to $20,000 by PatientsLikeMe to Make-A-Wish Massachusetts and Rhode Island to help fund life-affirming wishes for seriously ill children.

Data for you. For others. For good.

 

 

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PatientsLikeMe Encourages Sharing of Health Data for Good with 2nd Annual “24 Days of Giving”

Posted December 1st, 2015 by

The Gift of Health Data Can Help Others, and Advance Research

CAMBRIDGE, MASS., December 1, 2015—On this #GivingTuesday, PatientsLikeMe is once again celebrating “the new tradition of generosity” by encouraging people to donate something unusual but vital: their health data. Starting today and continuing for #24DaysofGiving, PatientsLikeMe is asking anyone who is living with a chronic condition to donate their health data after donating to their favorite non-profit.

PatientsLikeMe is a patient network that aggregates the health data members share so that others can see what’s working for patients like them, and what’s not. Health data includes information about a disease or condition—how people live with it, what their doctors are doing to treat it, and what it’s like to navigate their health journey. PatientsLikeMe also analyzes the donated data to spot trends in specific diseases and works with partners to incorporate patient-reported evidence in their research. Partners can then create new products and services that are more in tune with what patients experience and need.

Michael Evers, Executive Vice President of PatientsLikeMe’s Consumer and Technology Group, said that members donated a record amount of health data last year, the first time the campaign was introduced. “Tens of thousands of new and existing members answered the call by contributing treatment evaluations, symptom reports and other health updates. But they didn’t stop on the first day of giving. They shared their data over the course of the entire month, and continued to do so this year. I hope others will join us again so that everyone has the best information to make decisions, and we can continue to bring real-world perspectives to research.”

PatientsLikeMe plans to give back in several ways during the campaign. While it returns study results back to participants as quickly as possible, the company will once again showcase some of the most important research that has benefited from patient data in the last year and beyond. It’s also making a donation of up to $20,000 to Make-A-Wish Massachusetts and Rhode Island to help fund life-affirming wishes for seriously ill children.

Members use PatientsLikeMe for a range of reasons. For some, tracking their condition is the most vital. Allison talks in this video about living with bipolar II, and how she uses PatientsLikeMe to track her moods. “I haven’t had any episodes in the last five years because I have the data to link all the pieces together. I’m prepared because of PatientsLikeMe.”

Gus, who was recently diagnosed with amyotrophic lateral sclerosis (ALS), contributes his data to make sure others like him have a game plan for living with the condition. “The person who has just been diagnosed isn’t thinking about anything else. Their head is spinning. I want to create a manual so that others can understand what’s working for me and anyone else living with ALS, and make educated decisions to improve their quality of life.“

“24 Days of Giving” will be active across PatientsLikeMe’s Twitter and Facebook social media channels through December (#24DaysofGiving). Anyone who is living with a chronic condition can create a profile on PatientsLikeMe and start tracking their symptoms, treatments and quality of life. Existing members are encouraged to keep their profiles up-to-date or complete a new treatment evaluation. To learn more, go to www.patientslikeme.com.

About PatientsLikeMe

PatientsLikeMe 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 non-profits develop more effective products, services, and care. With more than 380,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 70 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Margot Carlson Delogne
PatientsLikeMe
mcdelogne@patientslikeme.com
781.492.1039


A Day in the Life of Health Data and Patient Safety Clinical Specialist Christine Caligtan

Posted December 5th, 2012 by

What’s it like to work at PatientsLikeMe?  We are continuing to reveal just that with our monthly blog series “A Day in the Life,” which features PatientsLikeMe employees from different departments.  Today we’d like to introduce you to Christine Caligtan, RN, MSN, a registered nurse who has served as our Health Data and Patient Safety Clinical Specialist since May 2011.  Find out what that involves, why she made the switch to the health startup world and much more in our interview.

PatientsLikeMe Health Data and Patient Safety Clinical Specialist Christine Caligtan, RN, MSN

1.  What’s it like to be a registered nurse at a health startup?

I could not be happier as a registered nurse at PatientsLikeMe. It’s the best of both worlds: I get to interact with patients online, and I am satisfying the informatics side of my interests by working the patients’ data and fostering their ability to track and maintain their health with online tools.

When I started working as a nurse I never thought my career path would lead me to a health startup. As I encountered different clinical settings and patient experiences, I knew that technology was the key to advancing healthcare.  From that point, I decided I wanted to work in the field of nursing informatics. The first step in that direction was when I was asked to join a multi-disciplinary team to help build and design an electronic health record (EHR) for a hospital in New York City.  Linking the patients and the healthcare team to the power of technology is extremely satisfying.

I first learned about PatientsLikeMe when I was in grad school.  I was taking a course called Consumers and Interactive Healthcare, and my professor and advisor Lena Sorenson shared with us some of the innovative health companies for consumers, and PatientsLikeMe was one of them! In fact, Lena encouraged me to apply to PatientsLikeMe since I was looking for a shift in my career.  It has turned out to be a perfect fit.

2.  What kind of projects are you working on right now?

We have been working on some improvements for our epilepsy community, making existing tools easier to use and investigating how to better connect doctors and patients. Then, on a daily basis, David Blaser, our Health Data and Drug Information Clinical Specialist, and I curate the data that our users submit to us. Any time there is a condition, treatment or symptom that our users cannot find in our database, we review it and add it to our growing database of patient-reported data. Our job is to ensure we maintain structure and organization with all of the data.

3.  You lead weekly yoga classes for PatientsLikeMe staff.  Tell us about that.

One of the definite highlights of my job! Every Wednesday I have the privilege of leading a small group of staff in a 90-minute Hatha/Vinyasa yoga class. I completed my teacher training during the summer of 2011 at South Boston Yoga. When I came back from training, there was a lot of interest and support in having me teach at work. It’s been a lot of fun and has helped me grow my practice in so many ways.

Christine Leading a Yoga Class at PatientsLikeMe Headquarters

Every week we roll out our mats and practice yoga together. All of my office mates know that Wednesdays at 5pm in Siberia (our back office space) is yoga time.  To counter the frenetic energy in the office, I like to begin class with meditation and some grounding poses and then slowly turn up the heat with the more challenging poses. We practice together to honor the time and space that we create for ourselves so that we can be our best selves.

4.  What are your three favorite things about working at PatientsLikeMe?

I am in constant amazement of the dedication to creating a meaningful experience for our patients and clients. I like our office camaraderie and commitment to creating change within healthcare. And of course, I love our weekly Wednesday yoga days. We rock out, sweat and play, and that’s my ideal end to a work day.

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Interested in making a difference in patients’ lives?  Check out our Careers page to see our current job openings.  Headquartered in Cambridge, Massachusetts, PatientsLikeMe is looking to hire an Analytics Strategist / Data Scientist, Chief Technology Officer, Data Visualization Engineer / Chart Developer and more at the moment.


Information Wants to Be Free

Posted February 22nd, 2012 by

This Editorial by our R&D Director, Paul Wicks, PhD, Was Published in the Scientific Journal Clinical Investigation.  Click to Read the Full Article.

(This post has been repurposed from an article written by PatientsLikeMe’s Paul Wicks for the scientific journal Clinical Investigation.)

But when it comes to clinical trials, can we afford to let it be?

“Information (or data) wants to be free” – so goes the mantra of hackers and data activists. In the past this meant computer geeks hacking into secure private networks to fulfill their own curiosity or liberate secret knowledge. Today, voluntary “data liberation,” as practiced by governments and corporations, is relatively commonplace and semiorganized groups with data freedom agendas, such as Wikileaks and Anonymous, have entered the mainstream consciousness.

For me, it feels increasingly challenging to delineate the margins where free data is good or bad. A highly networked, mobile-enabled popular uprising is considered a “revolution” when it’s against an oppressive regime, but considered a “menace” when it is a disenfranchised mob rioting in a western democracy. Bravely recorded videos of civilians attacked by autocratic regime military forces are essential in prosecuting crimes against humanity, but videos leaked from within a democratic military are a “threat to national security.” So while data itself may want to be free, we don’t always want it to be. And so, to clinical trials.

The Clinical Trials Search Feature at PatientsLikeMe

From a societal perspective, the requirement for any trials conducted in the USA to register on ClinicalTrials.gov can only be a good thing in preventing past sins, such as suppressing negative trials or changing end points. As the US government makes this data open, it also allows repurposing. For instance, PatientsLikeMe imports the complete dataset from ClinicalTrials.gov every night to let our membership know (free of charge) about the 30,000+ active trials for which they may be eligible. So far, so good. But what if even more clinical trial data were free?

Read the rest of R&D Director Paul Wicks’ editorial in Clinical Investigation here.

PatientsLikeMe member pwicks


How to Thrive: Takeaways from TEDx Cambridge

Posted November 30th, 2011 by

Patient Experience Manager Kate Brigham and I attended TEDx Cambridge last week, a one-day event full of thought-provoking and inspirational talks about Ideas Worth Spreading (TED’s mission). The participants didn’t want to just survive, they wanted to Thrive, which was this year’s theme. Speakers, including our President and Co-Founder Ben Heywood, enlightened the crowd with how we can help ourselves in small ways and inspire others in the process.

The Entrance to TEDx Cambridge 2011

Throughout four sessions packed with 30+ speakers on the topics of Mind, Body, We, and Beyond, many shared how people can improve themselves individually, by being part of a community, and by giving back to others. Some advice is expected—sleep more, drink less caffeine, eat more vegetables, try yoga—but other points were more novel.

For example, we were encouraged by Matt Daniell to try something, anything, for a month as “time becomes much more memorable when undertaking 30 day challenges.” Using research on the effects of body posture on hormones, Amy Cuddy shared that doing a power pose for just a few minutes (like putting your feet up on your desk) is minimal effort, but can benefit your brain as well as others’ perception of you. (Note: she recommended we put our feet up in private, not in a meeting!) One of the lessons that seemed to resonate most was from Priya Parker, who encouraged the audience to not worry about keeping all options open—that it’s FOMO (the fear of missing out) and FOBO (the fear of better opportunities) that contribute to many people’s anxiety and stress.

PatientsLikeMe President and TEDx Speaker Ben Heywood (Center) Along with Brothers Jamie Heywood (Left) and Stephen Heywood (Right), Whose ALS Diagnosis Inspired the Creation of PatientsLikeMe

In addition to Ben talking about PatientsLikeMe, other speakers shared the importance of connecting people with others like them, making data more accessible and empowering patients to take control of their health. Greg Epstein and Jesus Gerena, although in different fields (a Humanist Chaplain and Activist, respectively) arrived at the same conclusion: that when people come together and help one another, the entire group is empowered and everyone benefits.

Our ears also perked up when Sandy Pentland, a social scientist at MIT, discussed how important data is and stated that “personal data is the new oil of the Internet.” Further affirming the importance of data, John Sheffield talked about how he wants to make sure that genomics analysis is accessible, repeatable and shareable. He’s found in his field of data architecture that’s it’s all about connections with others, a point of view we certainly share!

Heart Patient and TEDx Speaker Hugo Campos

One story that perhaps applies most to what we’re doing here at PatientsLikeMe was presented by Hugo Campos, a heart patient who is literally on a quest to liberate data from his own heart. Although he has a high-tech cardiac defibrillator, he doesn’t have access to the data collected by this device. We’re with you, Hugo: “We all have the right to our own health information!”

At PatientsLikeMe, we help people Thrive by connecting patients so that they can share their experiences, find others like them and, together, learn how to best improve their health. From disease-specific outcome scores to our Quality of Life survey and InstantMe tool, we offer all sorts of ways to monitor your health and assess the impact of various treatments and interventions.

How do you help yourself and others Thrive? Share your thoughts in the comments section.  Also, check out the video of Ben’s talk.

PatientsLikeMe member emorgan


A Little More About Us: A Look Back at the Founding of PatientsLikeMe

Posted July 21st, 2011 by

“I got this call from my brother Stephen, and he said the news doesn’t look good. At that point, he’d been through enough processes to know what that meant – he had ALS. So I began this journey with my brother and my family…. We were thinking there had to be a way to make this about the patient. But it started like everyone else. You get that phone call, and your life changes.”Jamie Heywood, Co-Founder

Recently, we launched a new and improved About Us page that included a short video about our company history. Now, we’re pleased to unveil a longer, more in-depth video that allows you to hear our founding story from four PatientsLikeMe executives and learn what drew each of them to become a part of our groundbreaking concept.

Tune in below to hear where it all started and why, five years later, we’re committed to continuing the journey we’re all on – as a company, as patients and as family members of those affected by disease.

You can also watch this insightful piece (~15 minutes) in three smaller segments:  Chapter 1, Chapter 2 and Chapter 3.