指导数据共享和整合决策的四个问题。

IF 1.6 Q3 HEALTH CARE SCIENCES & SERVICES International Journal of Population Data Science Pub Date : 2023-10-04 eCollection Date: 2023-01-01 DOI:10.23889/ijpds.v8i2.2159
Amy Hawn Nelson, Sharon Zanti
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引用次数: 0

摘要

导言:本文提出了一个 "四问框架",以指导数据集成合作伙伴建立强大的治理和法律基础,支持合乎道德的数据使用:虽然该框架是根据美国日常整合公共数据的工作制定的,但它旨在成为一个简单易懂的工具,可适用于任何情况:方法:该框架是通过一系列公共审议工作组和 15 年来在美国各地与各种数据整合工作打交道的实地经验制定的:四个问题--这样做合法吗?这符合道德规范吗?这是个好主意吗?我们如何知道(以及由谁来决定)?这四个问题应在既定的数据管理框架内与核心合作伙伴一起考虑,以确定在建立集成数据系统 (IDS) 时以及在具体数据项目的每个阶段是否以及如何向前推进。我们将深入讨论这些问题,尤其关注治理在建立合法和合乎道德的数据使用方面的作用。此外,我们还提供了两个 IDS 站点的数据管理结构示例和假设情况,说明了四问框架的主要考虑因素:健全的管理流程对于确定数据共享和整合是否合法、合乎道德以及在当地环境下是否是一个好主意至关重要。这一过程是迭代性的,既是技术性的,也是关系性的,这意味着在数据使用项目的每个阶段都应优先考虑合作伙伴之间的真实合作。四个问题 "可作为确定是否进行数据共享和整合的指南,并应在项目的整个生命周期中定期重新审视:通过一系列公开讨论工作组和 15 年的实地经验,我们制定了 "四问框架",以确定是否以及如何在数据共享和整合项目的各个阶段推进 IDS 建设。这符合道德规范吗?这是个好主意吗?我们如何知道(由谁决定)?
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Four questions to guide decision-making for data sharing and integration.

Introduction: This paper presents a Four Question Framework to guide data integration partners in building a strong governance and legal foundation to support ethical data use.

Objectives: While this framework was developed based on work in the United States that routinely integrates public data, it is meant to be a simple, digestible tool that can be adapted to any context.

Methods: The framework was developed through a series of public deliberation workgroups and 15 years of field experience working with a diversity of data integration efforts across the United States.

Results: The Four Questions-Is this legal? Is this ethical? Is this a good idea? How do we know (and who decides)?-should be considered within an established data governance framework and alongside core partners to determine whether and how to move forward when building an Integrated Data System (IDS) and also at each stage of a specific data project. We discuss these questions in depth, with a particular focus on the role of governance in establishing legal and ethical data use. In addition, we provide example data governance structures from two IDS sites and hypothetical scenarios that illustrate key considerations for the Four Question Framework.

Conclusions: A robust governance process is essential for determining whether data sharing and integration is legal, ethical, and a good idea within the local context. This process is iterative and as relational as it is technical, which means authentic collaboration across partners should be prioritized at each stage of a data use project. The Four Questions serve as a guide for determining whether to undertake data sharing and integration and should be regularly revisited throughout the life of a project.

Highlights: Strong data governance has five qualities: it is purpose-, value-, and principle-driven; strategically located; collaborative; iterative; and transparent.Through a series of public deliberation workgroups and 15 years of field experience, we developed a Four Question Framework to determine whether and how to move forward with building an IDS and at each stage of a data sharing and integration project.The Four Questions-Is this legal? Is this ethical? Is this a good idea? How do we know (and who decides)?-should be carefully considered within established data governance processes and among core partners.

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来源期刊
CiteScore
2.50
自引率
0.00%
发文量
386
审稿时长
20 weeks
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