A Patient Advocate's Perspective On Patient-Centered Comparative Effectiveness Research
A Patient Advocate's Perspective On Patient-Centered Comparative Effectiveness Research
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DOI：
10.1377/hlthaff.2010.0632
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发表时间：
2010-10-01
期刊：
影响因子：
9.7
通讯作者：
Coelho, Tony
中科院分区：
文献类型：
--
作者：
Coelho, Tony
《患者保护和平价医疗法案》创造了一个新的短语和概念：以患者为中心的结果研究。这篇评论的作者曾担任美国众议院议员，来自加州，他也是一名癫痫患者，也是一名患者倡导者。他在通过医疗改革法的过程中与立法者进行了磋商。在这里，他借鉴了他的各种经验，为法律如何为以病人为中心的比较有效性研究提供必要的政策框架提供了视角。该框架的要素包括多个利益攸关方，特别是患者的有意义的参与;承认患者之间的个体差异和推进个性化医疗的重要性;透明度和参与机会;广泛的、以临床为重点的研究议程;以及适当交流结果的必要性。
The Patient Protection and Affordable Care Act created a new phrase and concept: patient-centered outcomes research. The author of this commentary, who served as a member of the US House of Representatives from California, is also a patient with epilepsy and a patient advocate. He consulted with lawmakers in the passage of the health reform law. Here he draws on his varied experiences to provide perspective on how the law will provide the necessary policy framework for patient-centered comparative effectiveness research. Elements of that framework include the meaningful engagement of multiple stakeholders, most especially patients; acknowledgment of individual differences among patients and the importance of advancing personalized medicine; transparency and opportunities to participate; a broad, clinically focused research agenda; and the need to communicate results appropriately.