《Rebel Health：医疗护理领域的患者主导革命指南》（MIT Press）

English | February 13th, 2024 | ISBN: 0262048892 | 200 pages | True EPUB | 2.90 MB

An action-oriented and radically hopeful field guide to the underground, patient-led revolution for better health and health care.

Anyone who has fallen off the conveyer belt of mainstream health care and into the shadowy corners of illness knows what a dark place it is to land. Where is the infrastructure, the information, the guidance? What should you do next? In Rebel Health, Susannah Fox draws on twenty years of tracking the expert networks of patients, survivors, and caregivers who have come of age between the cracks of the health care system to offer a way forward. Covering everything from diabetes to ALS to Moebius Syndrome to chronic disease management, Fox taps into the wisdom of these individuals, learns their ways, and fuels the rebel alliance that is building up our collective capacity for better health.

Rebel Health shows how the next wave of health innovation will come from the front lines of this patient-led revolution. Fox identifies and describes four archetypes of this revolution: seekers, networkers, solvers, and champions. Each chapter includes tips, such as picking a proxy to help you navigate the relevant online communities, or learning how to pitch new ideas to investors and partners or new treatments to the FDA. On a personal level, anyone who wants to navigate the health care maze faster will want to become a health rebel or recruit some to their team. On a systemic level, it is a competitive advantage for businesses, governments, and organizations to understand and leverage the power of connection among patients, survivors, and caregivers.

Proactive, optimistic, and innovative, Rebel Health is a guiding light for anyone who wishes to join the health rebel alliance and become the hero of their own story.

一本以行动为导向、充满 radically 希望的地下革命指南，旨在为更好的健康和医疗提供道路。 任何在主流健康医疗流程中掉队，并深入到疾病阴影角落的人都知道，这是一片多么黑暗的地方。基础设施、信息和指导在哪里？下一步该怎么做？《反叛健康》一书作者苏萨安娜·福克斯利用了二十年追踪患者、幸存者及护理人员专家网络的经验，为寻找出路提供了方法。从糖尿病到肌萎缩性脊髓侧索硬化症，再到莫比斯综合症以及慢性病管理，《福克斯》一书中她汲取了这些个体的智慧，了解他们的行事方式，并激发了一个集体力量更健康的能力正在逐渐形成中的反叛联盟。 《反叛健康》展示了下一代医疗创新将从这由患者主导的革命前线诞生。福克斯指定了并描述了这个革命的四种类型：寻觅者、网络者、解决者和领袖。每一章中都包含建议，比如挑选一个代理协助你参与相关在线社区，或者如何向投资者和伙伴推销新想法或向FDA介绍新疗法等。就个人而言，任何人想要更快地穿越医疗保健迷宫时都会希望成为健康叛逆者或将他们招致麾下。从系统层面来看，了解并利用患者、幸存者和护理人员之间的联系力量对于企业、政府和社会组织来说是一种竞争优势。 积极主动、乐观和创新的《反叛健康》为希望加入健康叛逆联盟及创造自己故事中的英雄的人指引了方向。

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