健康数据的二次使用中的可持续性 - - 范围审查
Tim Kilgus1, Alessia Nowak2, Martin Gersch1
1Freie Universität Berlin, School of Business & Economics, Germany.
Studies in health technology and informatics
|August 23, 2024
概括
实现可持续的健康数据再利用需要解决技术,组织和监管方面的挑战. 本次审查审查了长期数据共享和平台经济可行性的战略.
科学领域:
- 医疗信息学 医疗信息学
- 数据科学数据科学数据科学
- 信息治理 信息治理
背景情况:
- 健康数据的二次使用为研究和公共卫生进步提供了巨大的潜力.
- 然而,实现健康数据共享倡议的长期可持续性仍然是一个复杂的挑战.
- 现有的框架往往忽视了数据可持续性的进化,关系和持续方面.
研究的目的:
- 调查健康数据再利用中的可持续性多方面的性质.
- 识别技术,组织和监管领域的关键挑战和最佳实践.
- 分析当前的做法,并为可持续的健康数据共享提出适应的原则.
主要方法:
- 使用范围审查方法来系统地检查文献.
- 审查的重点是技术,组织内部,组织内部和监管视角.
- 分析考虑了可持续发展的进化,关系和持续维度.
主要成果:
- 在调整监管规范 (例如,FAIR原则) 与实际数据治理方面存在重大挑战.
- 组织结构和责任对于促进有效的数据共享至关重要.
- 数据共享平台的经济可持续性经常被忽视,但对于长期可行性至关重要.
结论:
- 可持续的健康数据再利用需要采用整体方法,整合技术基础设施,强大的治理和经济模型.
- 调整数据共享原则以满足长期的关系和持续需求至关重要.
- 进一步研究健康数据共享平台的经济可持续性是有必要的.
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