COVID and the Commonwealth: An iTHRIV Health Status Registry

Data Science and collaboration are at the core of iTHRIV, the Integrated Translational Health Research Institute of Virginia.

iTHRIV “is a collaboration of public and private institutions across the Commonwealth of Virginia that promotes shared resources and best practices, team science, community engagement and innovation” (UVA Research Development). 

iTHRIV partners with four flagship health and research institutions across Virginia - Inova, UVA, Virginia Tech, and Carilion Clinic.

By bringing together data scientists, students, physicians, and hospitals iTHRIV is working to tap into the immense data available in healthcare with the ultimate goal of improving clinical research and healthcare across the state.

These practices and values remain central in iTHRIV’s response to COVID-19. 

As the COVID-19 pandemic escalated, a continuous problem in understanding the disease and its impact, is misleading data. Hospitals have data on how many people have received a COVID-19 test, how many tests have been positive, and more data on who has come into the hospital with symptoms. 

What about all the other residents in the Commonwealth? How have they been impacted and how is that changing over time?

iTHRIV recognized this problem and knew that in order to accurately analyze data related to COVID-19, more data was needed. 

Thus, COVID and the Commonwealth: an iTHRIV Health Status Registry was born. 

This is an online registry, which any Virginia resident can participate in, that seeks to collect COVID-19 related information from the Commonwealth of Virginia. 

Don Brown, founding director of the Data Science Institute (now School of Data Science) and professor at UVA, is the co-director of iTHRIV and the principal investigator of this registry.

“There is so much that we do not understand about the novel coronavirus and COVID-19 and that lack of understanding complicates all aspects of our response,” Brown said. “In creating the COVID and the Commonwealth registry our goal is to try to lift that ‘fog-of-war’ somewhat and provide us with better data to inform research, treatments, decisions, and policies.” 

The Health Status Registry is for any Virginia resident, healthy or sick. The goal is to have a fuller picture of COVID-19 in Virginia. With this information, iTHRIV hopes to gather data about the following:

How many people have had symptoms, but stayed home? How many people have been in contact with someone who has had symptoms? How many people have had no symptoms? How has the impact been different for people of different demographics or people in different industries? How many people have been social distancing? How many people have not been wearing masks or maintaining social distancing in public?

“We hope that researchers from throughout Virginia will use the data in the registry to improve our understanding of both the virus and the disease it causes,” Brown said.

Participants can update their information at any time, as symptoms may present weeks later or circumstances may change. This registry is not a one-time snapshot, but rather a picture into COVID-19’s impact throughout the pandemic. Information and data volunteered by participants are securely protected by the University of Virginia Health System. 

Johanna Loomba, the Research Concierge Services and Informatics Core Manager for iTHRIV, is co-investigator and project manager for the registry. She noted that the key to this project’s success will be broad community engagement and reliance on cross-state partnerships.   

“We are not doing this alone. We are very grateful to have the advice and support of partners across the Commonwealth,” Loomba said. “We have assembled an Advisory Committee, with representation from community members and community health leaders, to shape our approaches to both continual advertising as well as future requests for the data. Ultimately, iTHRIV aims to be an information bridge between the health researchers and the communities they serve.”  

As COVID-19 spreads throughout cities and counties in Virginia, healthcare providers, hospitals, government officials, and more have to make various decisions regarding public health and safety of civilians. 

How can this be done accurately without all the information present about this virus?

As stated by iTHRIV, “The data from this registry may fill a gap in what we know and empower communities to make more informed decisions.”

For more information on COVID and the Commonwealth: An iTHRIV Health Status Registry, click here.