8 posts tagged “good”

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.

 

 

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2014 recap – part II

Posted December 30th, 2014 by

2014 was full of new partnerships, research initiatives and PatientsLikeMe milestones (we just celebrated our 10th anniversary last week!), and in 2015 we’ll continue to put the patient first in everything we do.

At PatientsLikeMe
Everything we do starts with the community that shares their health data and experiences, which enables innovation and change in healthcare, for good. Here’s just some of what everyone helped accomplish in 2014:

  • We formed our first-ever, patient-only Team of Advisors to give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients.
  • Three new advisors were named to the Scientific Advisory Board for the Open Research Exchange (ORE), a platform where researchers design, test and share new measures for diseases and health issues. The board was formed in 2013 to lend scientific, academic, industry, and patient expertise to ORE
  • The community celebrated the sixth anniversary of PatientsLikeMeInMotion™.
  • We worked with Tam, a PatientsLikeMe MS member, to develop the first-ever patient led health measure for chronic pain on the Open Research Exchange. She’s going to start testing the measure in January and it will be available in the ORE library in 2015.
  • Data for Good launched in March topromote the value of sharing health information to advance research and underscore the power of donating health data to improve one’s own condition.
  • We followed that up with 24 Days of Giving in November, a month-long campaign to encourage patients to rethink how they donate health data. Garth Callaghan, a PatientsLikeMe member, kidney cancer fighter and author of Napkin Notes, shared his inspiration along the way.

Partnerships
We’re partnering up with even more people who believe in patient-centered healthcare. Here are some of the new friends we met in 2014 and are excited to be working with:

  • One Mind to help the millions of people worldwide who are experiencing post-traumatic stress (PTS) or traumatic brain injury (TBI), or both.
  • Actelion to create a new patient-reported outcomes tool for the rare form of non-Hodgkin’s lymphoma called MF-CTCL.
  • Cancer Treatment Centers of America (CTCA) at Eastern Regional Medical Center (Eastern) to help ease patients’ transitions from cancer treatment to survivorship.
  • LUNGevity Foundation, to help people diagnosed with lung cancer. LUNGevity will become the first nonprofit to integrate and display dynamic data from PatientsLikeMe on its own website.
  • USF Health to improve health outcomes for multiple myeloma patients. The partnership is PatientsLikeMe’s first with an academic health center.
  • Schwartz Center for Compassionate Healthcare to better understand patients’ perceptions of compassionate care and strengthen the relationship between patients and their healthcare providers.
  • Sage Bionetworks on a new crowdsourced study to develop voice analysis tools that both researchers and people with Parkinson’s disease (PD) can use to track PD disease progression.
  • Genentech (a member of the Roche Group) to explore use of PatientsLikeMe’s Global Network Access, a new service for pharmaceutical companies that delivers a range of data, research and tools to help researchers develop innovative ways of researching patients’ real-world experience with disease and treatment.

Out of the office
We’re always looking for ways to get out into the community and get involved out of the office, whether speaking to the FDA or simply helping out at a volunteer event. Here’s some of where we were in in 2014:

In the news
And here are some of the highlights from PatientsLikeMe in the media in 2014:

For more PatientsLikeMe media coverage, visit our Newsroom.

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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.


PatientsLikeMe (mid-year) news report

Posted August 8th, 2014 by

 

We’re halfway through summer here at the PatientsLikeMe Boston office, and it’s been a busy 2014 so far – from the launch of the Data for Good campaign to new collaborations with One Mind and Genentech. In case you missed anything, here are some of the highlights:

In the news

Innovators in Health Data Series: No Data About Us Without Us
(Health Data Consortium)

10 Lessons From Empowered Patients
(US News)

PatientsLikeMe Offers Three Services for Pharma and Researchers
(Applied Clinical Trials)

Speaking the Patient’s Language
(Hospitals & Health Networks)

Straight talk with…Jamie Heywood
(nature.com)

Social Media Site Connects Patients Suffering From Similar Illnesses
(KPBS)

A listening cure: PatientsLikeMe gives patients voice in clinical trial design
(TED Fellows)

For more PatientsLikeMe media coverage, visit our Newsroom.


The Patient Voice- PF member Bryan shares his story

Posted July 10th, 2014 by

 

Since we announced #dataforgood back in March, many PatientsLikeMe members have been sharing about why they donate their own health experiences. Becca (fibromyalgia) and Ed (Parkinson’s) already shared their stories, and now we’re hearing from Bryan, an idiopathic pulmonary fibrosis (IPF) member. Check out his video above. Miss Becca or Ed’s? Watch them here.

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A New Year with Jamie Heywood

Posted January 10th, 2014 by

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It’s 2014, and it’s a significant year for PatientsLikeMe and our members. Later this year we’ll mark the 10th anniversary of our founding. As we reflect on where we’ve come from and where we’re going, there’s one thing that has never changed—our commitment to make sure your real-world experiences are a central part of improving healthcare. 

Changing medicine for the better is a journey. This year, we want all of you to join us on that journey, every step of the way. That’s why we’re starting a new initiative to get even more patient-reported data. Co-founder Jamie Heywood talks about the idea of data donation, and all the good it can do.

 

 

Wow, ten years. That’s a long time. What do you think are some of the most significant accomplishments of the last decade?

It’s been an amazing journey. We started this site so people, including my brother Stephen, could find information that helps them live better day-to-day and contribute data to research. We wanted to shake medicine up, to make it more about the patient, to help people connect with each other and see what their options were and take control of their health. At the heart of that has been this underlying goal to make patient experiences matter. We thought we could create a site that would make people happy with features like forums or condition trackers, but also allow them to contribute to research every time they logged in. When we started out, that had never been done before. We took a giant leap forward in validating patient-reported health outcomes when we announced the results of the lithium study in 2011, which showed the efficacy of lithium carbonate on ALS. That was the first time patient-reported data collected via a website was used to evaluate a treatment in real-time and to refute the results of a formal clinical trial. Since then, everything’s changed. Now we’re hearing more companies in the industry talk about the patient voice and the importance of listening to it. Together with our members, we’re making them focus on what matters most—the patients.

You’re talking a lot lately about “donating your data for good.” What’s that all about?

We created a kind of public service announcement for our members and the general public to showcase the good your health data can do – for you, for others, and for research. The more patient data we can get into the hands of researchers, the more we’ll learn about how to improve treatments and care. Every time you tell us how you’re doing, or add information about a symptom or treatment to your profile, or participate in a survey, you’re telling researchers what they need to know about what it’s like to live with a disease. I’d love to see every member update the information in their profile every week. If you can do that, we can really make a difference. If you don’t, we wait – we wait for more and more people to take part in research studies, one study at a time, year over year. Some people with some conditions don’t have time to wait. Some people don’t want to wait. I think we can change that, but it takes a village. We’re all in this together, and the only way anyone will learn more and really make an impact on healthcare is if everyone pitches in.

What impact has member-reported data had on research to date?
A tremendous impact! Our research team has published more than 40 publications in scientific journals using the data and experiences that members share on the site. We started in ALS and took the patient voice to the forefront in that disease, highlighting under-recognized symptoms and, with the help of an inspirational ALS patient named Cathy Wolf, upgrading the ALS measurement scale. In MS, we’ve had strong partnerships with pharmaceutical manufacturers to help them develop better products and services that have been informed by patients. For conditions like fibromyalgia, mood disorders, and HIV, we have published findings on how the support of patients like you can have a therapeutic effect on improving outcomes. In epilepsy, we found that members who have made more friends on the site see better clinical outcomes, too. And we’ve helped change healthcare policy working with the Institute of Medicine (IOM) and many other government entities. All of this fantastic work was made possible by the active engagement of our patients, the data they make available on their profiles, and their willingness to share openly to benefit one another.

What is your ultimate vision of what patient-reported data can do?

I think of PatientsLikeMe as a dynamic learning system, one that can learn in real-time from the experience of every patient in the world. We want that system to be with you as you and your doctor talk about your treatment plan, to give you the most current data to help you understand where you are in your illness, to draw on other patients’ experiences so that you can create the best path forward based on your goals. That’s the impact patient-reported data can have on every patient’s life, and why we need to get as much of it as possible.