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首页> 美国卫生研究院文献>Applied Clinical Informatics >From Commercialization to Accountability: Responsible Health Data Collection Use and Disclosure for the 21st Century
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From Commercialization to Accountability: Responsible Health Data Collection Use and Disclosure for the 21st Century

机译：从商业化到问责制：21世纪的负责任的健康数据收集使用和披露

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Proposed initiatives in the U.S. that require sharing of clinical health information and facilitate easier access to that information through open, standard digital interfaces raise risks that sensitive information may be shared more broadly outside of legal protections for health data and may be more readily commercialized, in addition to existing commercialization of health data by health care institutions allowed by federal privacy laws. Is commercialization truly health data's “boogeyman” or is the problem the sharing of health data without sufficient protections against harm or inappropriate use? Can privacy risks be mitigated while still enabling value to be gleaned through more widespread sharing of health information? In this editorial, we argue that the focus should not be on whether the entity is or is not currently covered by federal health privacy laws, or whether the data are or are not “commercialized.” Instead, U.S. policies and practices should encourage (or outright require) (1) responsible use of data to improve health and health care, (2) greater transparency to and participation by patients and consumers, and (3) controls to minimize harm to individuals and populations.
机译：拟议在美国的举措需要分享临床健康信息并促进通过开放的信息，标准数字接口更容易获得该信息，提高敏感信息可以更广泛地共享敏感信息的风险，并且可以更容易地商业化。通过联邦隐私法允许的医疗机构现有健康数据的现有商业化。是商业化真正健康数据的“Boogeyman”或者是在没有充分保护伤害或不恰当使用的情况下分享健康数据的问题？隐私风险是否可以通过更广泛的健康信息进行更广泛的共享来减轻才能使仍然能够收集价值？在这方面，我们认为重点不应该对联邦健康隐私法案的实体是或不是目前没有被联邦健康隐私法所涵盖的，或者是否数据是不是“商业化”。相反，美国政策和实践应该鼓励（或彻底要求）（1）负责人使用数据来改善健康和医疗保健，（2）患者和消费者的更大透明度和参与，（3）控制以最大限度地减少对个人的伤害和人口。

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