Research Data Commons
The iTHRIV Research Data Commons is Now in Phased Roll Out, Revolutionizing UVA’s Approach to Research Data Management
The Informatics Core of the integrated Translational Health Research Institute of Virginia (iTHRIV) builds software and system solutions to support team science and accelerate scientific discovery and innovation. The iTHRIV Research Data Commons is a new solution that provides health researchers and data stewards with a single interface to manage, share and use research data throughout its lifecycle, from initial design and approval through data collection and analysis, and ultimately publication. The product facilitates access while enhancing compliance, making it a win for both research teams and administrators at our institution.
This product has been designed as a scalable research data infrastructure with a web interface in the iTHRIV Research Concierge Portal that enables secure and compliant interactions between iTHRIV users and data assets located behind institutional firewalls. The first successful deployment of the Research Data Commons at UVAHealth was made possible by close partnership in developing these tools between the School of Medicine, School of Data Science and Medical Center.
Tracey Hoke, UVA Health Chief of Quality and Performance Improvement and iTHRIV Co-Investigator, remarked, “This type of collaboration across the Health System is what will take our research from prominent to pre-eminent, and will allow for resource sustainability beyond any funded grant period.”
Don Brown, iTHRIV Co-Director and Informatics Core Lead, described the importance of this milestone, saying, “This initial iTHRIV deployment of the Commons is a critical first step to providing a data infrastructure for UVA researchers that can support data management, transfer, sharing, and, analysis.” Foundational features of Version 1 of the iTHRIV Research Data Commons that demonstrate the transformative nature of this new tool include the following:
Granular permissions are defined at the project and individual dataset level allowing principal investigators and data administrators to share stewardship.
Increased compliance and alignment with IRB approvals by automatically restricting highly sensitive data permissions to active study personnel via an interface with the UVA IRB-HSR database.
Limited datasets or de-identified datasets can be exposed to the appropriate team members at partner institutions while still allowing UVA team members to work with identified data. This helps ensure that researchers are aligned with Office of Sponsored Programs requirements and regulations around data sharing outside of our institution.
Manual and automated population of project and dataset descriptions and characteristics (metadata) to support data organization, discovery, and compliance so that research data can be systematically characterized and indexed for the first time at our institution.
Integration with research databases, such as REDCap, allows periodic, scheduled extracts that can then be shared with the appropriate project stakeholders. This allows project owners to expose certain elements of their data to a broader audience while maintaining control and protection over the source data.
The Research Data Commons is embedded in the iTHRIV Research Concierge Portal, ensuring that researchers working with data have easy access to relevant educational materials and the integrated concierge service which provides consults regarding regulatory requirements, data acquisition, analysis, and sharing.
PHASED PRODUCT LAUNCH
iTHRIV has initiated a phased roll-out of this product and use is currently limited to a small set of initial UVA projects. By working closely with research teams on these early Research Data Commons projects, with team members spanning the UVA School of Medicine, School of Data Science, School of Education and School of Arts and Sciences, the iTHRIV team can continue to test and refine system features, monitor system activity, and work to enhance the existing security model. “We could not be more excited about this early success of the Commons,” said Dr. Karen Johnston, Associate Vice President for Clinical & Translational Research and iTHRIV co-PI. “We recognize that development of such an infrastructure is extremely complex and we could not have done it without the commitment across the health system and other schools. We are thrilled that our team is being recognized nationally as leaders in this space in the CTSI network. This is true team science and another opportunity for iTHRIV to facilitate and accelerate the research success of our clinical and translational workforce.”
By the start of 2023, iTHRIV plans to expand use of the system to all UVA researchers conducting clinical and translational research and to allow limited public access to certain project and dataset descriptions as well as published datasets. iTHRIV partner institutions (Virginia Tech, Inova Health, and Carilion Clinic) will be adding their own branches to the federated iTHRIV Research Data Commons later this year, thereby integrating this product with their own local data environments and demonstrating the potential for further cross-state expansion.
"Even smaller labs are now unable to fully analyze and explore the large volumes of biomedical data that they are generating, and the analysis gap gets larger as we move up to center- and programmatic-level research", said Dr Joe Mychaleckyj, Assistant Dean for Biomedical Data Sciences Research in the School of Medicine. "With this new infrastructure in place, researchers in the School, and later, in our partner organizations, will be able to discover data sets and projects that would otherwise remain siloed and hidden, potentially generating new and exciting opportunities for collaboration. Many congratulations to the whole iTHRIV team in accomplishing this huge first milestone for the Research Data Commons.”