17 posts tagged “dataforgood”

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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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


Data donations make wishes come true

Posted September 10th, 2015 by

Back in December 2014, the PatientsLikeMe community donated 450,000 health data points during the 24 Days of Giving campaign, and a special thanks to everyone who participated and have continued to donate their data for good. Every donation made wishes come true for children with life-threatening medical conditions, and on behalf of the community, PatientsLikeMe made a $20,000 donation to Make-A-Wish® Massachusetts and Rhode Island, which helped Keith and Scarlett take a break from aggressive and uncomfortable treatments and doctors’ visits to go on faraway adventures with their families. Read about their stories below:

Keith
When 17-year-old Keith was diagnosed with lymphoma, his life was forever changed. Instead of fishing and playing sports, like he used to before he got sick, he now spends time in hospitals, enduring uncomfortable treatments. Keith longed to take a break from doctor’s visits and have a carefree vacation with his family; he wished to tour the Hawaiian Islands with his family on a Norwegian Cruise.

The PatientsLikeMe community made this happen! Once aboard the cruise ship, the crystal clear waters mesmerized Keith, as they took him to the Hawaiian islands of Kahului, Hilo, Kona, and Nawiliwili. Each new island provided a new world to explore. Keith and his family enjoyed pristine beaches, volcano views, whale watching and deep sea fishing.

Keith’s trip renewed his strength and hope for the future. He told Make-A-Wish Massachusetts and Rhode Island, “if you think about all the people who are emotionally going through so much because of what you’re going through, you become stronger than you can ever imagine. It shows your loved ones that there’s nothing to worry about.”

Thank you for donating your data and helping to give Keith and his family a vacation of a lifetime.

Scarlett
Though diagnosed with a brain tumor, three-year-old Scarlett wished to visit the TradeWinds Island Resort in Florida to explore the sea and the surf like her cartoon friends in her favorite movie, “Finding Nemo.” Scarlett and her family began their trip with a limousine ride to the airport. Upon arriving in sunny Florida, Scarlett tossed off her shoes to wiggle her toes around in the sand. She swam or built sandcastles on every beach – there was plenty for her to discover both in and out of the water. She even got to ride a giant waterslide and tried eating alligator meat at dinner.

Scarlett smiled all week long and her family savored quality time together. She had a week of carefree childhood. Scarlett’s mom and dad really enjoyed reminders of their daughter’s adventurous spirit.

Scarlett’s mom, Michelle, wanted to share with the caregiving community a few tips on coping with a young child who has a serious illness. Here’s what she shared:

When we were going through Scarlett’s treatment, people said to us ‘I don’t think I could do it’ and I always said to them ‘When you have to do something, you find a way.’ What were we going to do? Lay in bed and pull the covers over our heads? I would say:

  1. Don’t be afraid to accept any help that is offered (or ask for help) and don’t think people can read your mind. If someone asked, “What can I do?” I asked for specific things like “come keep us company during infusion weekends in the hospital” or asked for clothes when I was so stressed out that I lost weight and clothes for Scarlett after her surgery when she couldn’t pull a shirt on over her head.
  2. For couples – let one person be the emotional support and the other be the physical support. My husband is a nurse so he took care of making sure she drank plenty of water and ate plenty of fiber. I made sure that we still went to the park and birthday parties and lived life as normally as possible.
  3. My husband’s advice – drink prune juice and lots of water. Believe it or not, we probably saved her kidneys by giving her syringes filled with water all day when she didn’t want to drink. We kept her regular by giving her prune juice every day. Simple but very important.

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The Patient Voice- MS member Jackie shares her story

Posted January 12th, 2015 by

 

When Jackie was diagnosed with multiple sclerosis after a long, exhausting process, she struggled with a fear of the unknown and had no idea what she would be facing. But then she connected with the thousands of MS members on PatientsLikeMe. Jackie shared with the community about how she felt her current medication was making matters worse instead of better, and others responded with how they had the same experience. They told her about a new medication that seemed to be working for some of them. Jackie’s doctor prescribed it after she mentioned what others had shared, and she’s been having good luck with it ever since. Watch the video to see more of her journey.

 

 

Share this post on Twitter and help spread #dataforgood. And don’t forget to check out previous #dataforgood member videos.


The Patient Voice: Garth shares his cancer story for 24 Days of Giving

Posted December 12th, 2014 by

After Garth was diagnosed with cancer, he made a promise to his daughter Emma: he would write 826 napkin notes so she had one each day in her lunch until she graduated high school.

“In the beginning they never had a deep meaning. They were generally just notes of reminders. ‘I love you’ or ‘Have a good day.’ The notes took on a little different of a meaning after I was diagnosed with cancer. I recognized that I was looking at my legacy.”

Garth’s napkins are his personal legacy, but he also has a medical legacy – the health data he donates on PatientsLikeMe. This month, join Garth in 24 Days of Giving, a campaign centered around patients, driving medicine forward and making good things happen, together. Every piece of health data that is shared will contribute towards a $20,000 donation to Make-A-Wish® Massachusetts and Rhode Island to help fund life-affirming wishes for seriously ill children.

If you’re already a member, add your data to 24 Days of Giving. If not, join PatientsLikeMe and see how your data can make a difference.

Share this post on Twitter and help spread #dataforgood. And don’t forget to check out previous #dataforgood member videos.


The Patient Voice- Epilepsy member Letitia shares her story

Posted September 25th, 2014 by

 

 

What would you do if you were living with seizures from epilepsy since you were ten years old? And you weren’t even able to drive a car? Letitia turned others living with epilepsy on PatientsLikeMe and shared about her journey in a recent video. Watch above to see her inspiring story, and how she’s helping others through her own experiences and the data she’s donating on PatientsLikeMe.

 

 

Share this post on twitter and help spread #dataforgood. And don’t forget to check out previous #dataforgood member videos.