11 posts tagged “#24DaysofGiving”

Ryan and Emma’s stories: Make-A-Wish® Massachusetts and Rhode Island

Posted November 30th, 2016 by

Last December, patients like you came together to donate more than 476,000 health data points, including nearly 30,000 treatment reports and close to 120,000 symptom reports. The data that everyone selflessly donated has a heartbeat that will keep on giving – helping other patients like you and accelerating research.

And because you helped us reach our goal, your data also made wishes come true for two children with life-changing medical conditions. On your behalf, PatientsLikeMe made a $20,000 donation to Make-A-Wish® Massachusetts and Rhode Island, which helped Ryan and Emma take a break from aggressive and uncomfortable treatments and doctors’ visits to go on faraway adventures with their families. Check out their stories:

Ryan’s Island Adventure

Thirteen-year-old Ryan loves warm weather, swimming and being at the beach. After being diagnosed with a gastrointestional stromal tumor, surgeries and treatment kept Ryan away from seeing his friends and playing his two favorite sports – basketball and baseball. Ryan daydreamed about leaving his worries behind and going on an island adventure. When he learned that his wish would be granted, more than anything, Ryan wanted to take a family vacation to Beaches Resort in Turks & Caicos!

From the moment he landed, Ryan couldn’t wait to explore the tropical island. He was greeted with the most spectacular views of palm trees and white sand beaches. Ryan and his family explored the villages that made up the resort – each themed after Italy, France, and of course, the Caribbean. His days were filled with waterslides, sun, relaxation, and a break from the everyday stress that had begun to define his daily life.

Being given the opportunity to travel was a perfect escape from doctor’s appointments and medical treatments and Ryan felt a new sense of hope upon his return home.

Emma Visits Hawaii

Eight-year-old Emma’s passion for the sea helped her through months of treatment for acute lymphoblastic leukemia, as she imagined beachside adventures outside of the hospital walls. Emma wished to go to “paradise” with a trip to Hawaii!

Upon arrival on the island, Emma headed straight to the azure water and warm sands. The adventurous girl spent her days swimming, snorkeling, surfing and sailing. Surfing was her favorite, and she “totally rocked” at it, standing up on the board on her first attempt! On land, Emma loved experiencing the color, tastes and spectacle of a traditional luau. The incredible scenery made the hospital feel like a distant memory.

Emma’s visit to Hawaii marked the beginning of a new chapter for her and her family. Together they celebrated the end of her treatment and now look forward to a bright future.

 

 

 

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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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Your data doing good: Our collaboration with the FDA

Posted December 21st, 2015 by

During #24DaysofGiving this December, we’ve been highlighting all the good your health data is doing. For this one, we wanted to share more about how the data you donate is the centerpiece of a new collaboration between PatientsLikeMe and the Food and Drug Administration (FDA).

Even after a new medication or treatment makes it through the rigorous clinical trial and FDA approval process, we still have a lot to learn about its impact in the real world. Clinical trials are considered the ‘gold standard’ of medical research, but they usually only account for a small fraction of the population that will eventually be prescribed that new treatment.

Today, the FDA reviews large claims data and uses a spontaneous reporting system of individual case safety reports to find out how a product is doing once it’s approved and in the market. If you think that sounds complicated and not very clear, you’re not alone. Basically, the FDA is waiting for a safety signal, dramatic event or adverse event (all fancy words for side effect) to happen that drug manufacturers are required to report. The problem is if you – the patient – or your doctor doesn’t submit a report about your experience to the drug manufacturer, then the drug manufacturer can’t report it to the FDA.

That’s why PatientsLikeMe and the FDA decided to collaborate this year. We wanted to see if patient-reported data from PatientsLikeMe could help the FDA identify new information about approved treatments when they are used outside of clinical trials. Since you generate the data, it provides important real-time insights into your experience over time, including drug tolerance, adherence and quality of life. In short, we’ll be learning if the aggregated real-world, longitudinal data you report can help the FDA better assess and manage risks.

But this isn’t entirely new to us here at PatientsLikeMe. We’ve actually been tracking the treatment effects you share about since 2008. In all, and thanks to your reporting, we’ve collected more than 110,000 side effect reports on 1,000 different medications. That’s information the FDA will now be able to study and analyze in addition to more traditional sources.

Now you know what’s behind our friendly emails and reminders when we ask you to update your treatments or complete a treatment evaluation during #24DaysofGiving. Everything you donate is going to help a whole lot of people!

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Your data doing good: The Lithium study

Posted December 18th, 2015 by

During #24DaysofGiving this December, we’re highlighting all the good your health data donations are doing. And this time, we’re starting at the beginning. 

As you probably know already, PatientsLikeMe launched its first community in 2006 for people living with ALS, also known as Lou Gehrig’s disease. Two years later, we had an amazingly engaged and research-focused community who were willing to share data to change what the world knows about ALS. This neurodegenerative condition is fatal and takes away people’s ability to walk, speak, use their arms, and eventually breathe. This is exactly what happened to our founders’ brother, Stephen.

So, in 2008, when the results of an Italian clinical trial were published in a highly respected scientific journal saying that the use of lithium carbonate could slow the progression of ALS, we had a member community that was hungry to learn more. Spearheaded by two very involved members – a Brazilian ALS patient named Humberto and a caregiver in the US named Karen – we set out on a journey to collect and analyze thousands of patients’ real-world data to understand how lithium carbonate was working beyond the clinical trial setting. The result was unexpected and unmatched in the world of medicine.

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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.

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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.

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Your data doing good: The Fitbit study

Posted December 4th, 2015 by

When you share your health data, we all learn

During #24DaysofGiving this December, we’ll highlight some of the most important things we’ve learned from data that members have selflessly shared, and all the good data donation is doing. One example is the Fitbit study we partnered with Biogen on earlier this year. Nearly 250 members living with MS took part in the study, using Fitbit trackers to monitor their walking activity. What did we all learn? That combining the data members add to their PatientsLikeMe profiles with data collected by activity trackers can impact self-discovery and research.

We’ve all seen the popularity of wearable devices (like activity trackers) soar in the last two years. They can keep track of the calories you eat, the steps you take, the sleep you get, and just about everything in between. They’re practical too: easy to use, progressively cheaper to buy, and so low-key that you almost forget they’re there.

As PatientsLikeMe is watching the world of devices evolve, we’ve actually been thinking about its potential impact in a different way, and on a totally different level. These devices make it easier to monitor what’s going on for patients in the real world and in between doctor visits, not just at one point in time, or at appointment with your care team.

Why does this matter to anyone living with MS? For the 45,000 members of the MS community on PatientsLikeMe, they know that the condition can impact their ability to get around. Yet, the standard test to measure how they’re doing over time is the walking test. It’s typically conducted in the perfectly flat and safe hallway of a doctor’s office. That’s not exactly the real world, where pavements can be uneven, obstacles get in the way, and the distance you need to walk is usually a lot farther than 25 feet.

So we thought about the data tracked while using these devices and the impact that they could have in a patient’s life. Could devices help give patients a bigger picture of their habits and health, and help them have more informed conversations with their care team about what to change to improve their outcomes?

Earlier this year, PatientsLikeMe partnered with pharmaceutical company Biogen to find answers, and set out to design a patient-centered study using wearable devices. We kicked off the study with 248 PatientsLikeMe members living with MS. Our goal was to learn if people living with MS could use wearable activity trackers to collect and share their mobility data, which could potentially provide relevant information to their care team and to other patients. Study results were presented at the 67th American Academy of Neurology’s (AAN) Annual Meeting in Washington, DC in April, and here’s what they revealed:

Members were engaged in tracking their activity, even though nearly half had never done so before.

  • About 82% of those that took part activated their Fitbit and authorized PatientsLikeMe to access their data.
  • As a group, they synced their devices an average of 18 days over the 21-day study, for a remarkable 87% adherence rate. Said another way, they stuck with the study. (Now, that’s really donating data!)
  • During the study they walked more than 15 million steps, the equivalent of 6,820 miles or the distance from Boston to Beijing, China.

The study had a lasting impact.

Annette, a PatientsLikeMe member and study participant who had never used a wearable activity tracker before, said she got a lot of positive reinforcement to do more each day. “The Fitbit also allowed me to track what I was eating and how I was sleeping. I made more positive choices as a result.”

Those 248 members used their Fitbits for four weeks, and then we reached out to them with a follow-up survey to get their feedback. About 190 of them completed the survey, and here’s some of what we learned:

  • 89% believe activity tracking is important for health management.
  • 55% believe that the device helped change their health routine.
  • 68% said the device would help them manage and track their MS.

The study and survey made it clear that activity monitoring has the potential to engage patients as advocates in their own care, and give healthcare providers a realistic view of their patients’ daily activities outside of the office. Just how far and wide that impact can go is what we could study next, thanks to patients like you who took these first steps with us to get it all started.

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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