Department of Population Health Sciences, Weill Cornell Medicine, New York, New York, USA.
Institute for Health Care Delivery Science, Icahn School of Medicine at Mount Sinai, New York, New York, USA.
J Am Med Inform Assoc. 2020 Jul 1;27(9):1352-1358. doi: 10.1093/jamia/ocaa089.
Among National Institutes of Health Clinical and Translational Science Award (CTSA) hubs, adoption of electronic data warehouses for research (EDW4R) containing data from electronic health record systems is nearly ubiquitous. Although benefits of EDW4R include more effective, efficient support of scientists, little is known about how CTSA hubs have implemented EDW4R services. The goal of this qualitative study was to understand the ways in which CTSA hubs have operationalized EDW4R to support clinical and translational researchers.
After conducting semistructured interviews with informatics leaders from 20 CTSA hubs, we performed a directed content analysis of interview notes informed by naturalistic inquiry.
We identified 12 themes: organization and data; oversight and governance; data access request process; data access modalities; data access for users with different skill sets; engagement, communication, and literacy; service management coordinated with enterprise information technology; service management coordinated within a CTSA hub; service management coordinated between informatics and biostatistics; funding approaches; performance metrics; and future trends and current technology challenges.
This study is a step in developing an improved understanding and creating a common vocabulary about EDW4R operations across institutions. Findings indicate an opportunity for establishing best practices for EDW4R operations in academic medicine. Such guidance could reduce the costs associated with developing an EDW4R by establishing a clear roadmap and maturity path for institutions to follow.
CTSA hubs described varying approaches to EDW4R operations that may assist other institutions in better serving investigators with electronic patient data.
在国立卫生研究院临床与转化科学奖 (CTSA) 中心中,采用包含电子健康记录系统数据的电子数据仓库进行研究 (EDW4R) 几乎无处不在。虽然 EDW4R 的好处包括更有效地、高效地支持科学家,但对于 CTSA 中心如何实施 EDW4R 服务知之甚少。本定性研究的目的是了解 CTSA 中心如何实施 EDW4R 以支持临床和转化研究人员。
在对 20 个 CTSA 中心的信息学领导者进行半结构化访谈后,我们对访谈记录进行了有针对性的内容分析,该分析得到了自然主义探究的启发。
我们确定了 12 个主题:组织和数据;监督和治理;数据访问请求流程;数据访问方式;为具有不同技能水平的用户提供数据访问;参与、沟通和素养;与企业信息技术协调的服务管理;在 CTSA 中心内协调的服务管理;在信息学和生物统计学之间协调的服务管理;资金方法;绩效指标;以及未来趋势和当前技术挑战。
这项研究是为了更好地理解和创建跨机构 EDW4R 操作的通用词汇迈出的一步。研究结果表明,有机会为学术医学中的 EDW4R 操作建立最佳实践。这种指导可以通过为机构提供明确的路线图和成熟度路径来降低开发 EDW4R 相关的成本。
CTSA 中心描述了 EDW4R 操作的不同方法,这可能有助于其他机构更好地为具有电子患者数据的研究人员提供服务。