Search AMIA.org

Clinical research data warehouses (RDWs) linked to genomic pipelines and open data archives are being created to support innovative, complex data-driven discoveries. The computing and storage needs of these research environments may quickly exceed the capacity of on-premises systems. New RDWs are migrating to cloud platforms for the scalability and flexibility needed to meet these challenges. We describe our experience in migrating a multi-institutional RDW to a public cloud.

Institutions must decide how to manage the use of clinical data to support research while ensuring appropriate protections are in place. Questions about data use and sharing often go beyond what the Health Insurance Portability and Accountability Act of 1996 (HIPAA) considers. In this article, we describe our institution's governance model and approach. Common questions we consider include (1) Is a request limited to the minimum data necessary to carry [...]

Measurement and data entry of height and weight values are error prone. Aggregation of medical record data from multiple sites creates new challenges prompting the need to identify and correct errant values. We sought to characterize and correct issues with height and weight measurement values within the All of Us (AoU) Research Program.

Obtaining electronic patient data, especially from electronic health record (EHR) systems, for clinical and translational research is difficult. Multiple research informatics systems exist but navigating the numerous applications can be challenging for scientists. This article describes Architecture for Research Computing in Health (ARCH), our institution's approach for matching investigators with tools and services for obtaining electronic patient data.

The integrated Translational Health Research Institute of Virginia (iTHRIV) aims to develop an information architecture to support data workflows throughout the research lifecycle for cross-state teams of translational researchers.

Integrating and harmonizing disparate patient data sources into one consolidated data portal enables researchers to conduct analysis efficiently and effectively.

Among National Institutes of Health Clinical and Translational Science Award (CTSA) hubs, effective approaches for enterprise data warehouses for research (EDW4R) development, maintenance, and sustainability remain unclear. The goal of this qualitative study was to understand CTSA EDW4R operations within the broader contexts of academic medical centers and technology.

Recent advances in the science and technology of artificial intelligence (AI) and growing numbers of deployed AI systems in healthcare and other services have called attention to the need for ethical principles and governance. We define and provide a rationale for principles that should guide the commission, creation, implementation, maintenance, and retirement of AI systems as a foundation for governance throughout the lifecycle. Some principles are derived from the familiar [...]

Health condition and outcome registry systems (registries) are used to collect data related to diseases and other health-related outcomes in specific populations. The implementation of these programs encounters various barriers and facilitators. Therefore, the present review aimed to identify and classify these barriers and facilitators.