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诚信企业研究中介:促进研究中对健康数据的道德、高效和安全访问。

The Honest Enterprise Research Broker: Facilitating Ethical, Efficient, and Secure Access to Health Data for Research.

作者信息

Keller Michelle S, Roberts Pamela, Japardi Kevin, Ebinger Joseph E, Davis Tod, Pevnick Joshua, Chevvuri Sivathmika, Stuck Hudson, Huang Shao-Chi, Kowalewski Edward, Lin Ashley, Sanapanya Andrew, Tomines Alan, SooHoo Spencer

机构信息

Division of General Internal Medicine, Department of Medicine, Cedars-Sinai Medical Center, Los Angeles, United States.

Division of Informatics, Department of Biomedical Sciences, Cedars-Sinai Medical Center, Los Angeles, United States.

出版信息

Appl Clin Inform. 2025 Mar;16(2):362-368. doi: 10.1055/a-2499-4090. Epub 2025 Apr 30.

DOI:10.1055/a-2499-4090
PMID:40306674
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC12043374/
Abstract

BACKGROUND

Health systems generate and store vast amounts of clinical data, requiring structured processes to ensure that secondary use of the data is available to researchers in an efficient, ethical, and secure manner.

OBJECTIVE

We describe a process to provide data to health system researchers at a large, multi-hospital health system that balances efficiency with security and ethics.

METHODS

The Honest Enterprise Research Broker (HERB) Committee has enacted a systematic process to deliver investigators requesting data, using pre-written SQL code, when possible, to increase efficiency, providing a suite of self-service tools for cohort size estimation, and assessing the security and privacy of data leaving the institution. We evaluated the number of extracts per year, the average time to delivery of the data extract, and user satisfaction with the process.

RESULTS

From 2018 to 2023, the HERB Committee completed 487 data extracts. The number of requests increased from 51 in 2018 to 121 in 2023. Even as the number of extracts increased, the number of hours per extract decreased from 12.5 in 2018 to 9 in 2023. User satisfaction surveys found a high degree of satisfaction with the process.

CONCLUSION

Through a process of continuous improvement, the HERB Committee has developed an expedient process to support the research needs of a large academic multi-hospital health system.

摘要

背景

卫生系统生成并存储了大量临床数据,需要有结构化的流程来确保数据的二次使用能够以高效、符合伦理且安全的方式提供给研究人员。

目的

我们描述了一个向大型多医院卫生系统的卫生系统研究人员提供数据的流程,该流程在效率与安全性及伦理之间取得平衡。

方法

诚信企业研究中介(HERB)委员会制定了一个系统流程,为请求数据的研究人员提供数据,尽可能使用预先编写的SQL代码以提高效率,提供一套用于队列规模估计的自助工具,并评估流出机构的数据的安全性和隐私性。我们评估了每年的数据提取数量、数据提取的平均交付时间以及用户对该流程的满意度。

结果

2018年至2023年,HERB委员会完成了487次数据提取。请求数量从2018年的51次增加到2023年的121次。即便提取数量增加,每次提取的时长也从2018年的12.5小时降至2023年的9小时。用户满意度调查显示对该流程高度满意。

结论

通过持续改进的过程,HERB委员会开发了一个便捷的流程,以支持大型学术多医院卫生系统的研究需求。

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