Enabling access to british birth cohort studies: A Secure Web Interface for the NSHD (SWIFT)
Enabling access to british birth cohort studies: A Secure Web Interface for the NSHD (SWIFT)
复制标题
允许访问英国出生队列研究：NSHD 的安全 Web 界面 (SWIFT)
DOI：
10.1109/health.2009.5406207
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发表时间：
2009
期刊：
影响因子：
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通讯作者：
K. Garwood
中科院分区：
文献类型：
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作者：
P. Watters;D. Kuh;S. Latham;I. Shah;K. Garwood
本文概述了医学研究理事会（MRC）全国健康与发展调查（NSHD）的新安全Web接口，这是一个基于Web的数据和元数据访问系统，用于世界上运行时间最长的纵向健康研究[1]。访问NSHD元数据和数据对于外部（非MRC）用户来说通常是一个挑战，因为底层数据和元数据格式在63年的运行中发生了巨大变化，并且因为元数据搜索和数据访问所涉及的过程是手动的，并且通常需要“现场”访问[2]。SWIFT的设计目标包括维护研究成员的机密性和隐私，使内部（MRC）和外部用户能够进行元数据搜索访问，方便从一系列基础格式下载和提取数据，以及实施程序以确保遵守MRC和NSHD治理小组的治理政策。本白皮书详细介绍了MRC开拓者“数据访问项目”的一些挑战和成功之处，该项目旨在实现使用SWIFT的访问，同时保护研究成员及其数据。
This paper provides an overview of the new Secure Web Interface for the Medical Research Council (MRC) National Survey of Health and Development (NSHD), which is a web-based data and metadata access system for the longest-running longitudinal study of health in the world [1]. Accessing NSHD metadata and data has often been a challenge for external (non-MRC) users, because the underlying data and metadata formats have changed dramatically in 63 years of operation, and because the processes involved in metadata search and data access were manual and usually required “on-site” access [2]. The design goals of the SWIFT include maintaining confidentiality and privacy of study members, enabling metadata search access to internal (MRC) and external users, facilitating data downloading and extraction from a range of underlying formats, and implementing procedures to ensure compliance with the governance policies of the MRC and the NSHD's governance panel. This paper details some of the challenges and successes of the MRC pathfinder “Data Access Project” to enable access using SWIFT while protecting the study members and their data.