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Mashup Score: 8Q&A with Deborah Kalb - 6 day(s) ago
Deborah Kalb’s blog is a treasure chest full of Q & As with authors and illustrators and I’ m honored to now be part of it. 1. What inspired you to write Rebel Health, and how was the book’s title chosen? As a researcher, I spend time in communities led by patients and caregivers who build new medical and assistive devices, come up with new treatments, and support each other’s survival, peer to peer. Working in the federal government and then as a strategist and board member for health care companies, I
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Mashup Score: 3Rebel Health - 7 day(s) ago
It will be published in February 2024 by MIT Press and is available for pre-order from your favorite retailer (click on Barnes & Noble, Amazon, Books a Million, etc.) Anyone who feels alone, forgotten, or lost in the shadows of suffering, whether they are navigating a new diagnosis or life with a chronic condition. Patients, survivors, and caregivers will learn new skills and how to deploy them for themselves and their loved ones. Anyone working inside health care who is fed up with the status quo. If
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Mashup Score: 7Hack needed: Tiny pills, trembling hands - 7 day(s) ago
I am sweeping the kitchen and just found one of my brother-in-law’s Parkinson’s pills [Ropinirole]. Every time he has to take it, he drops it. It is tiny and, well, he has Parkinson’ s. I can’ t tell you how many times the kids end up on the floor looking for the pill he just dropped. Are there any hacks for a Parkinson’s patient to manage those tiny pills? For those who aren’ t familiar with the term “hack,” its original meaning is “an appropriate application of ingenuity.” I’ ve written about home
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Mashup Score: 20Patient-led Innovation - 1 month(s) ago
Over the last 20 years, I have spent time in patient-, survivor-, and caregiver-led health communities, learning from rebels and pioneers about the possible future of medical and assistive devices, treatment discovery, public health surveillance, and more. Radical patients don’ t wait to be invited, they break in and take what they need from health care, inventing as they go. They often band together because mainstream institutions ignore or do not prioritize their problems. It is our opportunity to join
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Mashup Score: 40Rebel Health in the News - 2 month(s) ago
It’s been a fantastic six weeks since the release of my book, Rebel Health, and I thought I’ d take a moment to gather up the press clips and podcasts that have appeared so far. The patient-led care revolution – Q & A with Fiona Lowenstein in Harvard Public Health magazine. Favorite bit: Differentiating patient-led from patient-centered. “I have seen the shift to patient-led health care happen most radically when there are no clinicians around, whether because the people suffering are not yet visible to
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Mashup Score: 0Case study: Trevor’s disease - 2 month(s) ago
A fri end recently shared the following story of his successful navigation of the American health care system to get innovative treatment for his ankle. I was so impressed that I thought I’ d post it here as a beacon for anyone else searching for answers about the same challenges he has faced. It’s pretty geeky and detailed, but hey, that’s what a peer patient would want AND that’s what this blog is all about! If a search landed you here: Welcome! If you have any questions, please write a comment and my
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Mashup Score: 20Patient-led Innovation - 3 month(s) ago
Over the last 20 years, I have spent time in patient-, survivor-, and caregiver-led health communities, learning from rebels and pioneers about the possible future of medical and assistive devices, treatment discovery, public health surveillance, and more. Radical patients don’ t wait to be invited, they break in and take what they need from health care, inventing as they go. They often band together because mainstream institutions ignore or do not prioritize their problems. It is our opportunity to join
Source: susannahfox.comCategories: General Medicine News, General HCPsTweet
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Mashup Score: 0Hack needed: Tiny pills, trembling hands - 4 month(s) ago
I am sweeping the kitchen and just found one of my brother-in-law’s Parkinson’s pills [Ropinirole]. Every time he has to take it, he drops it. It is tiny and, well, he has Parkinson’ s. I can’ t tell you how many times the kids end up on the floor looking for the pill he just dropped. Are there any hacks for a Parkinson’s patient to manage those tiny pills? For those who aren’ t familiar with the term “hack,” its original meaning is “an appropriate application of ingenuity.” I’ ve written about home
Source: susannahfox.comCategories: General Medicine News, General HCPsTweet
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Mashup Score: 2Rebel Health: Rare Disease - 4 month(s) ago
The Global Genes RARE Advocacy Summit in September 2023 provided a forum for me to talk, for the first time, about my upcoming book and how rare disease communities have been a key part of my professional life. Here’s a set a questions that Sravanthi Meka of Global Genes asked me in advance of the meeting: What was your inspiration to write Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care? I could not resist sharing what I have learned after spending two decades on the front
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Mashup Score: 21Patient-led Innovation - 4 month(s) ago
Over the last 20 years, I have spent time in patient-, survivor-, and caregiver-led health communities, learning from rebels and pioneers about the possible future of medical and assistive devices, treatment discovery, public health surveillance, and more. Radical patients don’ t wait to be invited, they break in and take what they need from health care, inventing as they go. They often band together because mainstream institutions ignore or do not prioritize their problems. It is our opportunity to join
Source: susannahfox.comCategories: General Medicine News, General HCPsTweet
Connection among peer patients, survivors, and caregivers is like a cool cloth on a hot forehead, like finding someone who speaks your language in a foreign country. https://t.co/hqBOEUWRwj