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健康与福祉数据共享的社会契约需要一个可信的标准化同意书。

The Social Contract for Health and Wellness Data Sharing Needs a Trusted Standardized Consent.

作者信息

Brückner Stefanie, Kirsten Toralf, Schwarz Peter, Cotte Fabienne, Tsesis Michael, Gilbert Stephen

机构信息

Else Kröner Fresenius Center for Digital Health, Technische Universität Dresden, Dresden, Germany.

Institute for Medical Informatics, Statistics and Epidemiology, Leipzig University, Leipzig, Germany.

出版信息

Mayo Clin Proc Digit Health. 2023 Oct 7;1(4):527-533. doi: 10.1016/j.mcpdig.2023.07.008. eCollection 2023 Dec.

Abstract

The rise of health and wellness applications has led to a new category of citizen-generated health data, which are collected through sensors and user inputs. As more parameters are measured over longer time periods, these data will gradually become more important for disease prediction, care, and research than classical clinic-generated health data. Policymakers now recognize the potential of both data types in initiatives such as the European Health Data Space, which aims to enable data sharing for patient care and research at scale. Although it could be argued that clinic-generated data come from public-funded health systems and should therefore be sharable, after depersonalization, for public service, this argument extends poorly to data from wearables and applications. We propose a new approach for standardized health consent, both broad and dynamic, to overcome consent fatigue and engage citizens in data sharing.

摘要

健康与保健应用程序的兴起催生了一类新的由公民生成的健康数据,这些数据通过传感器和用户输入收集。随着在更长时间段内测量的参数越来越多,这些数据对于疾病预测、护理和研究将逐渐比传统临床生成的健康数据更为重要。政策制定者现在认识到这两类数据在诸如欧洲健康数据空间等倡议中的潜力,该倡议旨在实现大规模患者护理和研究的数据共享。尽管可以说临床生成的数据来自公共资助的卫生系统,因此在去个性化后应为公共服务而可共享,但这种论点很难适用于可穿戴设备和应用程序产生的数据。我们提出了一种新的标准化健康同意方法,既广泛又动态,以克服同意疲劳并促使公民参与数据共享。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/1928/11975685/30eb7b77a556/gr1.jpg

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