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Mashup Score: 0Transforming research participation - 2 year(s) ago
Below is a letter I wrote in response to Tania Simoncelli’s article, “From Bedside to Bench and Back,” (Issues in Science and Technology, Summer 2023). Read all the responses here. Biomedical research has blind spots that can be reduced, as Tania Simoncelli writes, by “centering the largest stakeholders in medicine—the patients.” By focusing on rare diseases, the Chan Zuckerberg Initiative is partnering with the most daring rebels of the patient-led movement. These pioneers are breaking new paths forward
Source: susannahfox.comCategories: Healthcare Professionals, Latest HeadlinesTweet
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Mashup Score: 1Rebel Health - 2 year(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
Source: susannahfox.comCategories: Healthcare Professionals, Latest HeadlinesTweet-
To qualify for the #BNPreorder discount, you need to join their free membership program (but you can opt out of any of the marketing emails if you'd like). Here's more info about #RebelHealth: A Field Guide to the Patient-Led Revolution in Medical Care: https://t.co/y6JxyAwEnS
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Mashup Score: 0Patient-, Survivor-, and Caregiver-led Innovation - 2 year(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: Healthcare Professionals, Latest HeadlinesTweet-
@thedougycenter First-hand experience with a health challenge can make all the difference when designing therapies. For example: - @joinequip: survivor-led eating disorder recovery - @Everlum_bio: caregiver-led rare disease lab More: https://t.co/JN9kzfw0xJ #RebelHealth #PeerHealthAdvice
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Mashup Score: 1Patient-led Innovation - 2 year(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: Healthcare Professionals, Latest HeadlinesTweet-
I call it "patient-led innovation" but that shorthand includes survivors and caregivers. Please tell me what orgs I've missed: https://t.co/JN9kzfwynh
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Mashup Score: 2Patient-led Innovation - 2 year(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: Healthcare Professionals, Latest HeadlinesTweet-
I'm collecting examples of patient-, survivor-, and caregiver-led companies and organizations as a tip list for investors, leaders, and policymakers who want to level up their health care game: https://t.co/JN9kzfw0xJ
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Mashup Score: 0About me - 2 year(s) ago
If you are looking for a bio, here is a short version and a long version. If you want to get in touch, my email address is SusannahRFox at gmail.com (note the middle initial R). I advise organizations — big and small, nonprofit and for-profit — on how to navigate the intersection of health and technology. One focus for both my advisory work and research is the power of connection among patients, survivors, and caregivers, which is captured in this 10-minute video I produced with Reframe Health. My book,
Source: susannahfox.comCategories: Healthcare Professionals, Latest HeadlinesTweet-
@EvanKirstel @IrmaRaste @eViRaHealth Thank you! My bio, contact info etc: https://t.co/UvrLsboyX7
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Mashup Score: 0I’ve got something to say - 2 year(s) ago
I have never done much ma rketing for myself as a keynote speaker, but I am on a mission to change the world. It’s not time to be shy. I want everyone to understand the power and potential of patients, survivors, and caregivers connecting with each other to solve problems. My upcoming book, Rebel Health, is a field guide to this revolution. If you or anyone you know is planning a conference this fall, winter, or next spring, please get in touch. My email is SusannahRFox at gmail dot com and comments are
Source: susannahfox.comCategories: Healthcare Professionals, Latest HeadlinesTweet-
“Susannah was terrific. She brought genuinely fresh thinking to the workshop and led a wonderful discussion among our participants. Could not be more pleased with her as a keynote speaker.” (No time to be shy when trying to change the world) https://t.co/GcyevtSqiK
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Mashup Score: 0Solvers attack problems - 2 year(s) ago
Solvers identify challenges, then test and develop new concepts, code, and inventions to meet their needs. They work on a problem with a singular focus because their life – or the life of a loved one – often depends on their ability to find or invent a solution. Some Solvers openly share their designs online for other people to build on. Others keep their cards close to their vests, working…
Source: susannahfox.comCategories: Healthcare Professionals, Latest HeadlinesTweet-
⬆️ Love this example of a #RebelHealth Solver. He built what he thought should exist for people with insulin-requiring diabetes. https://t.co/JBLLXvyU3B
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Mashup Score: 0Solvers attack problems - 2 year(s) ago
Solvers identify challenges, then test and develop new concepts, code, and inventions to meet their needs. They work on a problem with a singular focus because their life – or the life of a loved one – often depends on their ability to find or invent a solution. Some Solvers openly share their designs online for other people to build on. Others keep their cards close to their vests, working…
Source: susannahfox.comCategories: Healthcare Professionals, Latest HeadlinesTweet-
Solvers like @danamlewis identify problems and set to work, creatively getting access to resources. My upcoming book, REBEL HEALTH, is a guide to the patient-led revolution. Here's a preview: https://t.co/JBLLXvyU3B
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Mashup Score: 0Seekers go out on the hunt - 2 year(s) ago
As I’ve shared in previous posts, I’m writing a book for MIT Press about the key role that peer health advice plays at every level of our health care system. The people I’m describing in my book do not wait to be invited to create opportunities for positive change. They seize opportunities to take action. They reject the menu of options being offered and instead cook up their own solutions,…
Source: susannahfox.comCategories: Healthcare Professionals, Latest HeadlinesTweet-
Story time! In 2021, I caught up with a friend who had successfully navigated the American health care system to get innovative treatment for his ankle. He is an example of a Seeker: https://t.co/NmrEY2ZguP
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People w #RareDisease are the most daring rebels of the patient-led movement. Equally exciting: a broader coalition trying to improve lives using personal science or adapting medical & assistive devices. My reply to @TaniaSimoncelli's brilliant article: https://t.co/I2HLorWymD