Openness

How does ALS make you feel #InThreeWords?

Leave a Comment / ALS, Patient Experiences / By

May is ALS awareness month and this year, we’re joining the ALS Therapy Development Institute to share how ALS makes us feel, #InThreeWords. Sad, determined, frustrating as hell – just a few of the words PatientsLikeMe staff chose. Want to get involved? Check out what PatientsLikeMe staff had to say, including a video from our co-founder, Jamie Heywood.       And, check out 2016-2017 Team of Advisor member Cris’ three words: What are ALS members saying in the forum?    “Enraged, alone, afraid” – Kzueger  “Uninvolved, sorrowful, useless” – mbond0623 “Frustrated, compassionate, claustrophobic.” – jimig “Frustrated that I can’t stop this disease, overwhelmed at times by the losses created by ALS and grateful for kindness of others” – bountiful “Helpless, angry, pissed off.” – MsJLB   Let’s spread the word and end ALS together.   Share this post on Twitter and help spread the word.

Meeting PF patients where they are

2 Comments / Conditions, Idiopathic pulmonary fibrosis, Patient Experiences, Pulmonary fibrosis / By

Say hello to John (John_R), a father, grandfather and idiopathic pulmonary fibrosis (IPF) survivor. Sound familiar? Last year he shared his story about life after a double lung transplant and the importance of considering a lung transplant early. This year, John started a Facebook group to live-stream pulmonary fibrosis (PF) support group meetings and conferences. “I am very passionate about honoring the precious gift provided by my donor family and in living a life worthy of their generosity.” John received a bilateral lung transplant on January 1st, 2015, and believes he’s alive today thanks to his donor family and care team at UT Southwestern in Dallas. Now, he’s committed to raising awareness for the needs of the pulmonary fibrosis community. Life after transplant John’s life before transplant included the use of supplemental oxygen 24 hours a day, and what he calls, “an eminent expiration date” in his near future. He couldn’t visit family in Colorado or the higher elevations of New Mexico due to the altitude, and every breath was a struggle. “The biggest thing about life after lung transplant is that I no longer have a firm expiration date, I can have hope. I can go to Colorado and …

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Paul Wicks on the power of sharing data

Leave a Comment / ALS, Patient Experiences, Research / By

Back in December, our VP of innovation, Paul Wicks, Ph.D., spoke at the annual International Symposium on ALS/MND in Dublin. The goal of the annual meeting is to share new understandings of ALS/MND as quickly as possible through collaboration between leading researchers around the world. Now, we’re sharing a video of his presentation about what you and the ALS community has shared about living with ALS over the last 10 years. Here’s what Paul had to say: “We hope this presentation shows the power of patients sharing their data to help shed light on ALS. It’s a disease that can isolate people, rob them of their voice, and sap their strength to fight back, so we’re proud that we’ve been putting the data our members share to good use for over a decade now and we’re keen to share some highlights of what we’ve found.” What do you think about Paul’s presentation? Share your thoughts in the forum. Share this post on Twitter and help spread the word.

Caregivers and companions – PatientsLikeMe members talk about their service animals

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Service animals are often a topic of conversation in the PatientsLikeMe community, and many members frequently share their experiences with their furry friends. For example, Ted wrote about his service dog Catti-Brie in his blog interview. Here’s what other members are sharing about their animals: “Just last night when I was having a rough dream [my dog] stood with his paws front paws on the bed and barked till I picked him up and he laid across me and snuggled me to sleep again.” “I have a mobility service dog that helps with my balance. It’s like having a smart cane. When we go for walks she wears her mobility harness, but when we are home she only wears it when I’m having a bad day. She is also trained to do many other things like get items for me, and pick up things I dropped. She can also turn on/off the lights and open/close doors.” “Mali is my mobility and medical alert service dog. She has saved my life twice so far… as well as told two of my friends when they had tumors. She went through a spell when she was younger when she thought she had to …

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“Pay it forward.” Following up with idiopathic pulmonary fibrosis patient and PatientsLikeMe member Lori

3 Comments / Patient Experiences, Pulmonary fibrosis / By

  This is Lori’s third interview on the PatientsLikeMe blog! She’s been sharing her journey with idiopathic pulmonary fibrosis (a rare lung disease) with all of our followers here, along with her real-world health experiences on her PatientsLikeMe profile. Since the last time we caught up with her, Lori has lost 70 lbs., has made the transplant list and is playing what she calls ‘the waiting waltz.’ Check out the entire interview below where she talks about ‘life on the list’ and what inspires her to donate her health data. And don’t forget to check out Lori’s own blog called Reality Gasps. Thank you Lori for continuing to share and inspire! If you missed one of her previous interviews you can find those here.     You share a lot about reaching your weight loss goal (70 lbs! That’s awesome!). Can you describe what exercise means to someone living with IPF? And some of the other ways you achieved your goal? For someone living with IPF, exercise isn’t about pushing yourself to go farther, faster or harder — it’s about endurance. Pulmonary Rehab is always focused on doing whatever you’re doing for as long as you can. That’s because endurance …

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Subjects no more: what happens when trial participants realize they hold the power in clinical trials?

2 Comments / Patient Experiences / By

When I first became involved with online communities back in 2002, I moderated a small forum for patients with ALS/MND in the UK at King’s College Hospital to connect with one another, share tips and support, and to help our care center to serve them better. One area that remains controversial even to this day is clinical trials. ALS is a rapidly fatal and incurable illness, and as a young researcher I was often trying to field questions that patients had about the trials process: “Why aren’t there more trials taking place?” “Why do we have to have a placebo?” “If researchers think commonly available treatments like dietary supplements or antibiotics might slow my disease, why can’t I just take them anyway rather than being enrolled in a trial?” Given the severity of their situation and the slow pace of clinical trials (it’s estimated that it takes over 10 years for a new discovery to go from the lab to the clinic), I certainly sympathized with their frustrations and did my best to get the answers they needed, asking my medical colleagues where I could and translating the technical jargon. A few patients decided to go a step further than …

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Free Up Research! On Our Way to 25,000 Signatures

5 Comments / Patient Experiences, Research / By

Have you heard about the petition launched to the White House asking for all federally funded research to be freely accessible over the Internet? We’ve signed it and here’s why… Today, government-funded research (that’s research paid for with your tax dollars) is often something you can have access to in published scientific journals, but for a charge.  The petition is a call to action for the current Administration to make this research open to anyone who wants to read it — study participants, other patients, researchers, healthcare providers, industry, students, or anyone at all. Under the Administration’s new “We the People” policy, if the petition gets over 25,000 signatures within 30 days, the White House will issue a response. At the end of day two, there are already over 10,000 signatures! (Anyone can sign, even those internationally.)  You can read more about this open access movement and see what others are saying with the twitter hashtag #OAMonday. Simply put, we believe this campaign represents the power of Openness. At PatientsLikeMe we’ve long believed in the power of open access and take steps to ensure many of our publications such as our recent epilepsy user survey, our lithium study in Nature Biotechnology, and most …

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H@cking Medicine: Open Up!

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This weekend, MIT is hosting the first H@cking Medicine conference and PatientsLikeMe is proud to be a sponsor. The hacking encouraged here isn’t malicious, rather, it refers to a passionate subculture of computer programmers who believe in sharing, openness, and innovation (among other things).  Those are three concepts near and dear to us here at PatientsLikeMe. The goal of the conference is to inspire new ideas and create new relationships so that everyone will leave invigorated and excited about improving healthcare.  According to the H@cking Medicine website, “By using available tools in unconventional ways, we aim to revolutionize delivery of care, empower patients, and design new models of care. Typically, healthcare innovation is painfully slow and, even worse, often increases the cost.  We can make a difference by creating cost-effective solutions without waiting for fundamental advances in science.” To kick off the event on the first day, our own Jamie Heywood (keynote) as well as other leaders in the health care field will inspire audience members with ways to find and learn from the best use of openly shared data. The second day is dedicated to team hacking, and gives coders a practical look at what can be done with …

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How Privacy Impacts Personalized Medicine

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“We are standing on the edge of a new information age, and this new information age is going to clash with our existing understanding of concepts such as privacy and how we think about healthcare data and what should be done with it.” – Jamie Heywood PatientsLikeMe Chairman Jamie Heywood recently traveled to Zurich, Switzerland, to speak at the Personalized Medicine Symposium, sponsored by the Life Science Zurich Business Network. Tune in below for a video recap that features Jamie’s comments about rethinking the concept of privacy in order to personalize as well as democratize healthcare. “Humans are collectivists,” he argues. “We want to help each other. It’s intrinsic to human nature.” Look for Jamie’s comments to begin around the 3:01 mark.

PatientsLikeMeOnCall™: “A Look Ahead” at Openness in Healthcare (Episode 4)

Leave a Comment / ALS, Chronic Fatigue Syndrome, Conditions, Epilepsy, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, Organ Transplants, Parkinson's Disease, Patient Experiences, Rare Diseases / By

“I think we can see there are a lot of ways where openness can be powerful.  What’s necessary is to help facilitate openness and reduce the barriers to sharing medical information.” – Ben Heywood PatientsLikeMe Co-Founder Ben Heywood has blogged previously about openness and sharing – and how important they are for patients. In this edition of PatientsLikeMeOnCall, he talks about the progress we’ve made in achieving openness within the healthcare industry and his vision for the expansion of the patient voice. How can we put patients back at the center of healthcare? What barriers do we need to break through so that patients like you can openly share your health information?  Ben answers these questions and more in the fourth and final episode of our “A Look Ahead” podcast series. Tune in to Ben’s full interview here: Podcast Powered By Podbean Did you miss any of the first three episodes?  Find them on our blog or iTunes page.

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