平衡风险与机遇:数据赋能的卫生生态系统。

IF 5.8 2区 医学 Q1 HEALTH CARE SCIENCES & SERVICES
Lan Li, Emma Back, Suna Lee, Rebecca Shipley, Néo Mapitse, Stefan Elbe, Melanie Smallman, James Wilson, Ifat Yasin, Geraint Rees, Ben Gordon, Virginia Murray, Stephen L Roberts, Anna Cupani, Patty Kostkova
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引用次数: 0

摘要

本观点文件阐述了健康数据生态系统中当前的挑战和机遇,并借鉴了多方利益攸关方研讨会的见解。尽管在卫生保健系统数字化方面取得了显著进展,但数据共享和互操作性仍然有限,因此卫生保健数据的全部潜力尚未实现。迫切需要能够及时、安全、高效和可持续地收集和共享医疗保健数据的数据生态系统。然而,满足这一需求的努力面临着与隐私、数据保护、安全、民主治理和排斥相关的风险。主要的挑战包括互操作性差、数据治理方法不一致以及对数据商品化的担忧。虽然社交媒体等新兴平台在收集和分享卫生信息方面发挥着越来越大的作用,但它们与正式数据系统的整合仍然有限。一个稳健和安全的卫生数据生态系统需要更强大的数据治理、互操作性和公民参与框架,以建立公众信任。本文认为,将医疗保健数据重新构建为一种共同利益,提高数据采集和处理的透明度,以及促进应用程序编程接口(api)用于实时数据访问,对于克服这些挑战至关重要。此外,报告还强调,鉴于数据共享的多国性质,需要制定由多部门领导指导的国际规范和标准。最后,本文强调需要平衡风险和机会,以创建一个社会可接受的、安全和有效的卫生保健数据共享生态系统。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Balancing Risks and Opportunities: Data-Empowered-Health Ecosystems.

This viewpoint paper addresses the ongoing challenges and opportunities within the data-for-health ecosystem, drawing insights from a multistakeholder workshop. Despite notable progress in the digitization of health care systems, data sharing and interoperability remain limited, so the full potential of health care data is not realized. There is a critical need for data ecosystems that can enable the timely, safe, efficient, and sustainable collection and sharing of health care data. However, efforts to meet this need face risks related to privacy, data protection, security, democratic governance, and exclusion. Key challenges include poor interoperability, inconsistent approaches to data governance, and concerns about the commodification of data. While emerging platforms such as social media play a growing role in gathering and sharing health information, their integration into formal data systems remains limited. A robust and secure data-for-health ecosystem requires stronger frameworks for data governance, interoperability, and citizen engagement to build public trust. This paper argues that reframing health care data as a common good, improving the transparency of data acquisition and processing, and promoting the use of application programming interfaces (APIs) for real-time data access are essential to overcoming these challenges. In addition, it highlights the need for international norms and standards guided by multisector leadership, given the multinational nature of data sharing. Ultimately, this paper emphasizes the need to balance risks and opportunities to create a socially acceptable, secure, and effective data-sharing ecosystem in health care.

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来源期刊
CiteScore
14.40
自引率
5.40%
发文量
654
审稿时长
1 months
期刊介绍: The Journal of Medical Internet Research (JMIR) is a highly respected publication in the field of health informatics and health services. With a founding date in 1999, JMIR has been a pioneer in the field for over two decades. As a leader in the industry, the journal focuses on digital health, data science, health informatics, and emerging technologies for health, medicine, and biomedical research. It is recognized as a top publication in these disciplines, ranking in the first quartile (Q1) by Impact Factor. Notably, JMIR holds the prestigious position of being ranked #1 on Google Scholar within the "Medical Informatics" discipline.
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