Chu Isabella, Miller Rebecca, Mathews Ian, Vala Ayin, Sept Lesley, O'Hara Ruth, Rehkopf David H
The Stanford Center for Population Health Sciences, Stanford School of Medicine, Stanford University, Palo Alto, CA, USA.
Redivis, Inc, Oakland, CA, USA.
J Clin Transl Sci. 2024 May 2;8(1):e92. doi: 10.1017/cts.2024.530. eCollection 2024.
The Stanford Population Health Sciences Data Ecosystem was created to facilitate the use of large datasets containing health records from hundreds of millions of individuals. This necessitated technical solutions optimized for an academic medical center to manage and share high-risk data at scale. Through collaboration with internal and external partners, we have built a Data Ecosystem to host, curate, and share data with hundreds of users in a secure and compliant manner. This platform has enabled us to host unique data assets and serve the needs of researchers across Stanford University, and the technology and approach were designed to be replicable and portable to other institutions. We have found, however, that though these technological advances are necessary, they are not sufficient. Challenges around making data Findable, Accessible, Interoperable, and Reusable remain. Our experience has demonstrated that there is a high demand for access to real-world data, and that if the appropriate tools and structures are in place, translational research can be advanced considerably. Together, technological solutions, management structures, and education to support researcher, data science, and community collaborations offer more impactful processes over the long-term for supporting translational research with real-world data.
斯坦福人口健康科学数据生态系统的创建是为了便于使用包含数亿人健康记录的大型数据集。这就需要为学术医疗中心优化技术解决方案,以便大规模管理和共享高风险数据。通过与内部和外部合作伙伴合作,我们构建了一个数据生态系统,以安全合规的方式托管、整理数据并与数百名用户共享。该平台使我们能够托管独特的数据资产,并满足斯坦福大学全体研究人员的需求,而且该技术和方法的设计旨在可复制并移植到其他机构。然而,我们发现,尽管这些技术进步是必要的,但并不充分。在使数据具备可发现性、可访问性、互操作性和可重用性方面仍然存在挑战。我们的经验表明,对获取真实世界数据的需求很高,而且如果具备适当的工具和结构,转化研究可以得到大幅推进。技术解决方案、管理结构以及支持研究人员、数据科学和社区合作的教育,共同为长期支持利用真实世界数据进行转化研究提供了更具影响力的流程。