Search Results for: Patients Included

Getting “Patients Included” right Part II: Planning a patient-centric event

You may remember Part I of this blog that focused on the experiences of two PatientsLikeMe members who attended the Kidney Health Initiative’s (KHI) workshop, “Understanding patients’ preferences: Stimulating medical device development in kidney disease,” back in August. KHI is a partnership between the U.S. Food and Drug Administration (FDA) and the American Society of Nephrology (ASN). We recently spoke with patient Celeste Lee and Frank Hurst, MD, Medical Officer, Renal Devices Branch with the FDA, about the planning and consideration it took to make this event “Patients Included.” While this was the first patient-centric event KHI has held, they’ve worked to include the patient voice in all aspects of the initiative. Kidney patients and kidney patient organizations are represented on the KHI Board of Directors, and this past year the KHI Board of Directors formed a KHI Patient and Family Partnership Council (PFPC) made up of only patients and their caregivers. The PFPC helps provide strategic guidance on how to engage and include patients, their families and care partners in KHI activities. Celeste has had kidney failure from an autoimmune disease since she was 17. She’s been an advocate for decades and is now focused on patient-centered care. Celeste …

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Getting “Patients Included” right Part I: Two members attend a Kidney Health Initiative workshop

Back in August, the Kidney Health Initiative (KHI), a partnership between the U.S. Food and Drug Administration (FDA) and the American Society of Nephrology (ASN), held a workshop called “Understanding patients’ preferences: Stimulating medical device development in kidney disease.” But this was more than a workshop – it was an event centered around the idea of “Patients Included” – a movement started back in May to involve more patients on the planning committees, stages, and in the audiences of medical conferences. Sally Okun, our Vice President of Advocacy, Policy and Patient Safety spoke at the event and notes how patient-focused the entire workshop was in that “nearly 100 people among the approximately 150 who gathered for the event were patients living with and managing kidney disease every day, many joined by their caregivers.” “The patients were very open in the discussions and direct in their questions. Many talked about their experiences with hemodialysis and how difficult it is to live a normal life when one has to be at the dialysis center three days a week for many hours,” she says. “In contrast to the conventional treatment approach, the newer developments for hemodialysis at home were very interesting, and in …

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Making sure conferences are “Patients Included”

Picture this: you’re a medical professional and are about to open the doors to a conference you’ve spent years pulling together. You’ve booked your venue, have your sponsors lined up, got top headliners to give keynotes, picked your Twitter hashtag and have invited every industry pro to be a part of the event. In walk the physicians; check. Allied health professionals; check. Pharmacists; check. Industry leaders, life science CEO’s and top researchers; check, check, check. Notice anyone that’s missing? If medical conferences exist to create a network, to stimulate new collaborations, overturn redundant thinking, and to help attendees return to work reinvigorated, the conference that excludes patients misses hearing the most important voices in medicine. But luckily for you, patients living with a variety of conditions aren’t just sitting on the sidelines anymore. They’re proactively participating in these conferences any way they can, even if that means going through the virtual window. They watch the hashtag, pose questions, say they wish the conference were live-streamed, and ask attendees to smuggle out knowledge they could use to improve their care or offer them hope. If they’re ignored or marginalized they take to the Twittersphere and let their displeasure be known. “The …

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Fundraising for a health-related charity walk/run? Get sponsored by PatientsLikeMe!

Looking for ideas for raising more money for an upcoming cancer walk, MS bike ride, or other health-related charity event where you’ll be hitting the streets? Learn more about PatientsLikeMeInMotion! It’s a program that sponsors you and your team as you walk, run, cycle (etc.) with a nonprofit organization to raise funds and awareness for your disease or health condition (psst—PatientsLikeMe gear included). Read on! PatientsLikeMeInMotion has grown a lot since we launched it back in 2009! Members have raised funds for cancer, multiple sclerosis, ALS, epilepsy, kidney disease, psoriasis, mental health and more (just take a peek at our Pinterest board). In 2017, 89 members and their teams (with a total of nearly 2,000 participants) raised awareness and over $14,000 for their diseases. In the first half of 2018, 73 members from 24 states and their teams have already participated and raised more than $18,000. Interested in sponsorship by PatientsLikeMe? Here’s how to apply: Join PatientsLikeMe (membership is free)! Make sure your profile is up-to-date. Submit a request with your team and event details, including your preference of spiffy T-shirts or PatientsLikeMe hats (like the one above). We’ll confirm the details and you’ll be on your way. (See the full guidelines here to learn more.) Past participants, inspire others. If you’ve been a part of PatientsLikeMeInMotion, feel free …

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We the Patients: New PatientsLikeMe poll finds a unified voice on a U.S. health care plan

Repeal? Replace? Revise? While politicians have spent months debating the details of a U.S. health care plan, a recent poll of 2,755 PatientsLikeMe members has found that patients are largely aligned about components of a strong plan for the country.   “Despite the partisan divide in Congress about what should be included in a health care plan there is a singular voice in patients, who are agreed across party lines on the essential foundation for any plan.” — Sally Okun, PatientsLikeMe’s vice president of Advocacy, Policy and Patient Safety   Patients with a variety of conditions and from all 50 states (plus the District of Columbia) participated in the poll May 4-9. The poll launched on the same day that the U.S. House of Representatives voted (217 to 213) to narrowly pass the American Health Care Act (AHCA, sometimes nicknamed “Trumpcare” or “Ryancare”), which would repeal much of the Affordable Care Act (ACA, or “Obamacare”). The AHCA bill is now with the Senate for deliberation, revisions and possibly a vote in the coming days. Here are some highlights from the poll’s findings and the latest trends in patients’ opinions. The new (May) poll was a follow-up to a January 2017 …

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Meeting PF patients where they are

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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World Parkinson’s Day: Meet Eileen, a PatientsLikeMe researcher with a passion for PD

Today is World Parkinson’s Day, and 2017 marks the 200th anniversary of the identification of Parkinson’s Disease (PD). Meet Eileen Mack Thorley, a research scientist with a passion for PD research. By day, she works on a variety of research projects at PatientsLikeMe. On her own time, you might find her doing FaceTime with her dad to help him practice his physical therapy exercises for living with Parkinson’s. He was diagnosed with PD more than 10 years ago. Eileen said her father’s PD diagnosis inspired her to get involved with the Team Fox Foundation Young Professionals of Boston (part of the Michael J. Fox Foundation), and ultimately led her to venture into PD research as part of her day job. Eileen has a master’s degree in public health and specializes in epidemiology, data analysis and public health research. She has been working in the field for 8 years, previously focusing on the areas of substance abuse and maternal and child health. “Where I want to be now is focusing on Parkinson’s research and community health – living with the disease and bringing the patient experience into research,” Eileen said. In addition to a focus on traditional medical breakthroughs in Parkinson’s …

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“My experience as a patient and son helps me”: PatientsLikeMe software engineer Alex’s backstory

Meet Alex Bromley, a PatientsLikeMe software engineer who’s living with gastroesophageal reflux disease (GERD) and whose mother has fibromyalgia. He recently shared some insight on his and his mom’s conditions, his experiences as both a PatientsLikeMe employee and member and what he enjoys outside of work. What first drew you to working at PatientsLikeMe? Can you describe what you do in your role here?  A former employee and friend of mine, Joe, first introduced me to PatientsLikeMe in 2012. I decided to sign up as a patient and see what it was all about. When I saw that it included a robust fibromyalgia community, I was touched personally by the fact that someone like my mother, who has this mysterious condition, could talk and learn about it from other people. In my current role as a software engineer, I provide technical leadership to the PatientsLikeMe client team. We focus on supporting outside partnerships and collaborations, especially when it comes to custom software development. How does living with GERD affect you day to day? How do you use PatientsLikeMe as a patient? For a while, GERD started to change my life. I was no longer able to drink coffee, eat anything with tomatoes …

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PatientsLikeMe Adds Patient Reviews of Medications to Walgreens.com

Real-World Reports on Use, Effectiveness and Alternative Medications Now Available for Thousands of Brand Name and Generic Drugs CAMBRIDGE, MA., November 17, 2016—PatientsLikeMe has expanded the scope of patient-reported information it offers through Walgreens.com to help more people better understand how certain prescription medications may affect them. The new information, which is updated daily and comes from aggregated reports by PatientsLikeMe members, highlights the reasons why patients use specific prescription drugs and how effective they think they are. Also included are lists of the top five medication alternatives patients have tried for the same condition, as well as links to more extensive reports about dosage, duration, adherence and burden for more than 5,000 medications. PatientsLikeMe is a free network where anyone living with a chronic condition can track and share symptom and treatment experiences, connect with others and contribute data for research. The website has helped more than 400,000 people learn from each other about how to improve outcomes. Walgreens is the first pharmacy to provide PatientsLikeMe reports about medications on its website. The offering is an expansion of the collaboration between the two companies formed in 2015, when PatientsLikeMe first offered its patient-reported information on medications’ side effects and …

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Patients at work: Member Jenny launches online craft shop on Etsy

  A few weeks ago, we kicked off a new blog series about patients who have started (or are working on launching) their own businesses. We’ll be featuring some enterprising members and learning more about how they manage their health and their career goals at the same time. Today, we’d like introduce Jenny, (jhound), a member of the bipolar community who recently opened an online shop on Etsy called OldSchoolJenny. Jenny designs cards, scrapbooks, printable journal kits and other paper crafts with a vintage flair. When we caught up with her, she shared about her diagnosis experience, her creative process and the health benefits of working with a passion: “Having my Etsy business gives me reason to keep going. It gives me a sense of purpose and it also brings me a lot of joy. “ Can you tell us a little about yourself and your diagnosis experience? I grew up in Southern California in a foster home. I joined the military when I was 23 and met my husband who was also in the Navy in 2002. We lived in San Diego for the first five years of our marriage and moved to Michigan when we both got out of …

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