As COVID-19 spreads throughout cities and counties in Virginia, health care providers, hospitals and government officials must make many decisions regarding public health and safety of civilians.
How can this be done accurately with incomplete data about the virus?
Hospitals have data on the number of people who have received COVID-19 tests, how many tests have been positive, and how many people have come into the hospital with symptoms. But what about all of the other residents in the commonwealth? How have they been affected and how is that changing over time?
The Integrated Translational Health Research Institute of Virginia, or iTHRIV, recognized this problem and knew that in order to accurately analyze data related to COVID-19, more data was needed.
iTHRIV partners with three major research hospitals in Virginia – Inova Health System, UVA Health and Virginia Tech Carilion – bringing together data scientists, students and physicians and tapping into the immense data available in health care, with the ultimate goal of improving clinical research and health care across the state.
On Friday, iTHRIV launched an online registry, open to all Virginia residents, healthy or sick, that seeks to provide a fuller picture of COVID-19 in the commonwealth.
Don Brown, founding director of the University of Virginia’s Data Science Institute (now the School of Data Science) and William Stansfield Calcott Professor of Systems and Information Engineering 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 iTHRIV registry hopes to answer the following questions:
- 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 UVA Health.
The UVA iTHRIV team has worked closely with the Office of Health Equity at the Virginia Department of Health during the development of this registry. 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 VDH as well as other partners across the commonwealth,” Loomba said. “We are assembling 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.”