Human Immunodeficiency Virus (HIV), a leading cause of worldwide morbidity and mortality, continues to affect ~1.1M people in the United States of America with an estimated 35,769 new annual diagnoses in 2021. Previous studies have found that the movement of people across jurisdictional boundaries poses challenges for the accuracy and completeness of jurisdictional HIV data. Data sharing is essential to ensure public health efforts to engage persons with diagnosed HIV in medical care are optimized.
In response to these challenges, Georgetown University (GU) has designed and implemented an electronic, privacy-preserving, data sharing tool, known as the Black Box, to support de-duplication of cases in the National HIV Surveillance System and has successfully deployed this tool in 40 public health jurisdictions as of March 2024. The Black Box involves three elements: 1) the physical and hardware infrastructure, 2) the client interface, and 3) the ATra software.
Led by Principal Investigator Dr. J Smart and Co-Principal Investigator Dr. Anne Rhodes, GU’s interdisciplinary team will continue to recruit additional jurisdictions and expand the capabilities of the Black Box. Enrollment will include providing the client software, documentation, training, and support to allow jurisdictions to securely transfer their HIV surveillance data files to the Black Box. The Black Box will identify matches across all participating jurisdictions at least quarterly. Each jurisdiction will download its unique match reports using the ATra client and the SAS plugins and use that output to resolve duplicate cases between jurisdictions including those on the Cumulative and Routine Interstate Duplicate review lists sent out by CDC. This automated approach will free up valuable human resources; that is, the time traditionally spent on manual follow-up de-duplication, and allow surveillance data to be more timely, accurate, and complete.
This project will build on the de-duplication work that the GU team began in 2015 and has continued through 2024, including through the PS18-1805 grant funded by CDC from 2018 to 2024. The Black Box uses a matching algorithm that has been peer-reviewed and successfully utilized by jurisdictions. Recognizing the need for increased efficiency and enhanced de-duplication efforts, GU will collaborate with the public health jurisdictions identified in this solicitation to expand the Black Box usage to improve data sharing and de-duplication efforts. GU will develop a proof of concept for a secure server-to-server application in year 2 of the project, which can address legal issues faced in some currently non-participating jurisdictions and also allow more real-time sharing of changes in matches and key data elements.
GU will manage this project through the Office of the Senior Vice President for Research and Chief Technology Officer, with an Executive Sponsor Team led by the Senior Vice President for Research and Chief Technology Officer. The GU operational team has extensive experience in HIV surveillance data and de-duplication work and they have successfully implemented the technology across multiple projects.