PatientsLikeMe:線上患者病例資料共享平臺

PatientsLikeMe:線上患者病例資料共享平臺是一個致力於醫療保健病例分享的網站,通過分享、研究和病例資料分析,來為世界各地的患者提供相似病例搜尋和相關治療的服務網站,該網站服務宗旨是患者至上,提供最有效的方法來幫助患者恢復健康。

PatientsLikeMe:線上患者病例資料共享平臺

PatientsLikeMe成立於2004年,由桑麻省理工學院的工程師聯合創辦,五年前他們的一個朋友被確診為ALS盧伽雷氏症,於是他們開始尋找世界各地的病例參考,不幸的是並沒有多少可參考的病例,於是他們就有了創辦病例搜尋平臺的想法,通過團隊的方式來建立一個健康資料共享平臺,他們相信通過這樣的資料平臺可以改變患者的命運,讓更多的患者通過相似的病例來尋找解決辦法。

時至今日,PatientsLikeMe已經發展成為了以營利為目的的公司,遵循的核心價值是患者之上,提高透明度,存進開放式平臺,在這裡患者可以分享和實時學習,尋找類似病例資料,以改善患者的生活的挽救他人的生命。

PatientsLikeMe is committed to putting patients first. We do this by providing a better, more effective way for you to share your real-world health experiences in order to help yourself, other patients like you and organizations that focus on your conditions.

PatientsLikeMe was co-founded in 2004 by three MIT engineers: brothers Benjamin and James Heywood and longtime friend Jeff Cole. Five years earlier, their brother and friend Stephen Heywood was diagnosed with ALS (Lou Gehrig’s disease) at the age of 29. The Heywood family soon began searching the world over for ideas that would extend and improve Stephen’s life. Inspired by Stephen’s experiences, the co-founders and team conceptualized and built a health data-sharing platform that we believe can transform the way patients manage their own conditions, change the way industry conducts research and improve patient care.

Today, PatientsLikeMe is a for-profit company, but not one with a “just for profit” mission. We follow four core values: putting patients first, promoting transparency (“no surprises”), fostering openness and creating “wow.” We’re guided by these values as we continually enhance our platform, where patients can share and learn from real-world, outcome-based health data. We’ve also centered our business around these values by aligning patient and industry interests through data-sharing partnerships. We work with trusted nonprofit, research and industry Partners who use this health data to improve products, services and care for patients. (Read How We Make Money and our Privacy Policy for more.)

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