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Pulling Together

机译：齐心协力

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Jennie David was diagnosed with Crohn's disease at 12 years old. That was 18 years ago. When she was a teenager, she got involved with the patient advisory council of a learning health network called ImproveCareNow (ICN) that focuses on pediatric inflammatory bowel disease. In her previous experiences volunteering with research foundations, she felt that patients were treated as afterthoughts. "People were willing to have a patient at the table, but they didn't really want you at the main table. You were off to the side," she says. "They wanted us to give lovely emotional speeches, but it felt a little like we were window dressing. I realized that the only way to change things is through research and through standardizing care." Her experience with ICN was completely different, recalls David, who now has a Ph.D. and works as a pediatric psychologist at Nationwide Children's Hospital in Columbus, Ohio. She went to an ICN conference as a college student and felt engaged with all the participants. "All these people were introducing themselves by their first name and they seemed very interested in hearing more about my story," she says. "Later on, I was looking through the agenda for the conference and I realized that I was just talking with the people who created and run the network. It was a tremendous culture shock and it felt so different. They really wanted to know what I as a patient would want to have different about my care. And that was tremendously different - that people were paying attention, not just at the conferences, but in between conferences." Based on her own experience with surgery, she eventually co-led the development of a widely used ostomy decision-making toolkit for other patients who were considering surgery.
机译：珍妮大卫被诊断出患有克罗恩氏病12岁。十几岁的时候,她得到了参与病人学习卫生网络的咨询委员会称为ImproveCareNow (ICN)的关注小儿炎症性肠病。之前的志愿服务与研究经验基础,她觉得患者治疗追悔。病人在餐桌上,但是他们并没有真正想要的你在主桌上。她说。情感上的演讲,但感觉有点像我们被粉饰。改变事情的方法是通过研究和通过标准化保健。”ICN是完全不同的,大卫回忆道,他现在有一个博士,作为一个儿科工作心理学家全国儿童医院俄亥俄州哥伦布市。一名大学生,感到与所有参与者。自己的名字和他们似乎听到更多关于我的故事很感兴趣。”她说。会议议程,我意识到我只是与创建和的人运行网络。震惊和感觉如此不同。想知道我作为病人想要什么有不同的对我的照顾。非常不同——这人支付注意,不只是在会议,但在之间的会议。”通过手术,她最终共同领导一种广泛使用的造口术的发展为其他病人决策工具正在考虑手术。

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