同意从电子健康记录共享数据到研究存款：限制、障碍和代理

IF 2.7 4区心理学 Q2 PSYCHOLOGY, EXPERIMENTAL

Acta Psychologica Pub Date : 2025-06-19 DOI:10.1016/j.actpsy.2025.105176

Ève-Marie Roy , Iva Georgieva , Laurent Fradet , Laddawan Kaewkitipong , Matthieu J. Guitton

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引用次数: 0

摘要

在数据时代，生物医学研究的主要挑战之一是获得患者的信息。随着全球人口的健康数据被存储到电子健康记录中，研究界的一个挥之不去的需求是将这些数据转移到电子研究记录中，以便为研究目的访问。共享从电子健康记录到研究存款的数据的核心要素是同意。然而，如果无法预见将使用大量数据进行的研究的规模和结果，是否可以获得有效的同意？我们将分析可在电子健康记录和电子研究记录之间共享的数据的横断面、跨时间和跨空间特征。然后，我们将探讨确保同意有效性的约束和障碍，并解读同意分级的可能性。

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Consenting to share data from electronic health records to research deposits: Constraints, obstacles, and proxy

In the age of data, one of the major challenges of biomedical research is to have access to the patients' information. As health data of the populations are being globally stored into electronic health records, a lingering demand from the research community is to have these data transferred to electronic research records that would be accessible for research purposes. The central element for sharing data from electronic health records to research deposits is the consent. Yet, can a valid consent be obtained if the magnitude and outcomes of the research to be performed with massive data cannot be foreseen? We will analyze the trans-sectional, trans-temporal, and trans-spatial characteristics of the data that could be shared between electronic health records and electronic research records. We will then explore the constraints and obstacles to ensure the validity of the consent, and decipher the possibility of a gradation of the consent.

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来源期刊

Acta Psychologica PSYCHOLOGY, EXPERIMENTAL-

CiteScore

3.00

自引率

5.60%

发文量

274

审稿时长

36 weeks

期刊介绍： Acta Psychologica publishes original articles and extended reviews on selected books in any area of experimental psychology. The focus of the Journal is on empirical studies and evaluative review articles that increase the theoretical understanding of human capabilities.