Here we describe the design and implementation of a novel data management platform for an academic cancer center which meets the needs of multiple stakeholders.A small, cross-functional technical team identified key challenges to creating a broad data management and access software solution: lowering the technical skill floor, reducing cost, enhancing Racks user autonomy, optimizing data governance, and reimagining technical team structures in academia.The Hyperion data management platform was designed to meet these challenges in addition to usual considerations of data quality, security, access, stability, and scalability.Implemented between May 2019 and December 2020 at the Wilmot Cancer Institute, Hyperion includes a sophisticated custom validation and interface engine to process data from multiple sources, storing it in a database.Graphical user interfaces and custom wizards permit users to directly interact with data across operational, clinical, research, and administrative contexts.
The use of multi-threaded processing, open-source programming languages, and automated system tasks (normally requiring technical expertise) minimizes costs.An integrated ticketing system and active stakeholder committee support data governance and project management.A co-directed, cross-functional team with flattened hierarchy and integration of industry software management practices enhances problem solving and responsiveness to user needs.Access to validated, organized, and current data is critical to the functioning of multiple domains in medicine.Although there are downsides to developing in-house customized software, we describe a successful implementation of custom data management software in an academic cancer center.
Author summary Ensuring timely access to accurate data is critical for the functioning of a cancer center.Despite overlapping data needs, data are often fragmented and sequestered across multiple systems (such as the electronic health record, state and federal registries, and research databases), creating high barriers to data access for clinicians, researchers, administrators, quality officers, and patients.The creation of integrated data systems also faces technical, leadership, cost, and human resource barriers, among others.The University of Rochester Wilmot Cancer Institute (WCI) hired a small team of individuals with both technical and clinical expertise to develop a custom data management software platform addressing five challenges: lowering the skill level required to maintain the system, reducing costs, allowing users to access data autonomously, optimizing data security and utilization, and shifting technological team structure to encourage rapid innovation.We describe how this platform, Hyperion, was successfully designed, developed, and NASCAR Sets implemented at WCI.
We offer an overview of the data architecture, provide insight into the design elements that address our identified challenges, and discuss the performance of the system in terms of cost, speed, and user engagement.