Privacy protections to encourage use of health-relevant digital data in a learning health system.
Privacy protections to encourage use of health-relevant digital data in a learning health system.
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DOI：
10.1038/s41746-020-00362-8
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发表时间：
2021-01-04
影响因子：
15.2
通讯作者：
Mandl KD
中科院分区：
文献类型：
--
作者：
McGraw D;Mandl KD
美国国家医学院长期以来一直倡导建立一个“学习型医疗保健系统”，在护理过程中不断更新参考数据。要想建立一个快速学习系统来解决棘手的健康问题，就需要在保护患者和提供数据以改善健康和医疗保健之间取得平衡。美国公众对隐私的担忧以及对这些数据的不道德或有害使用的可能性，如果不积极解决，可能会打破这种平衡。新的联邦法律优先考虑共享健康数据，包括与患者数字化工具共享。美国的健康隐私法不涵盖许多消费者数字技术收集的数据，也没有更新以解决对大型科技公司进入医疗保健领域的担忧。此外，人们越来越认识到，许多传统上不被认为与医疗保健有关的数据类别，例如消费者信贷历史，确实可以预测健康状况和结果。我们提出了一种多管齐下的方法来保护健康相关数据，同时促进和支持有益的使用和披露，以改善个人和人群的健康和医疗保健。这种保护应适用于收集健康相关数据的实体，无论它们是否受联邦健康隐私法的保护。我们主要关注隐私，但也将保护免受伤害作为管理健康相关数据的综合方法的关键组成部分。美国政策制定者和监管机构在制定隐私法案和规则时应该考虑这些建议。然而，即使在没有新的联邦要求的情况下，我们的建议也可以为最佳做法提供信息。
The National Academy of Medicine has long advocated for a “learning healthcare system” that produces constantly updated reference data during the care process. Moving toward a rapid learning system to solve intractable problems in health demands a balance between protecting patients and making data available to improve health and health care. Public concerns in the U.S. about privacy and the potential for unethical or harmful uses of this data, if not proactively addressed, could upset this balance. New federal laws prioritize sharing health data, including with patient digital tools. U.S. health privacy laws do not cover data collected by many consumer digital technologies and have not been updated to address concerns about the entry of large technology companies into health care. Further, there is increasing recognition that many classes of data not traditionally considered to be healthcare-related, for example consumer credit histories, are indeed predictive of health status and outcomes. We propose a multi-pronged approach to protecting health-relevant data while promoting and supporting beneficial uses and disclosures to improve health and health care for individuals and populations. Such protections should apply to entities collecting health-relevant data regardless of whether they are covered by federal health privacy laws. We focus largely on privacy but also address protections against harms as a critical component of a comprehensive approach to governing health-relevant data. U.S. policymakers and regulators should consider these recommendations in crafting privacy bills and rules. However, our recommendations also can inform best practices even in the absence of new federal requirements.
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影响因子：
15.2
作者：
Coravos, Andrea;Khozin, Sean;Mandl, Kenneth D.
通讯作者：
Mandl, Kenneth D.
影响因子：
3
作者：
Anderson, Andrew C.;Chen, Jie
通讯作者：
Chen, Jie
影响因子：
3.3
作者：
Faden, Ruth R.;Kass, Nancy E.;Beauchamp, Tom L.
通讯作者：
Beauchamp, Tom L.
DOI：
10.1177/1073110520917035
发表时间：
2020-03
期刊：
The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics
影响因子：
--
作者：
Wagner JK
通讯作者：
Wagner JK