CAREWare in Atlanta and the "Data Divas"

Event Date: 

Friday, October 18, 2019 - 12:00pm to 1:00pm

This paper offers an ethnographic account of data teams in metropolitan Atlanta's clinical HIV safety net who operate software called CAREWare. CAREWare is the largest source of data for the federal Ryan White HIV/AIDS Program, payer of last resort for HIV care in the United States. CAREWare was released in 2000 and is supported by the federal Health Services and Resources Administration. The talk recounts how teams of data workers struggle with electronic medical records, screen interfaces, organizational challenges, server crashes, and an endless stream of paper forms to collect, digitize, audit, and report CAREWare data. Data for the paper emerge from fieldwork with clinical teams, CAREWare managers, and a group of women of color who conduct data quality assurance at one of the country’s largest HIV/AIDS clinics, calling themselves the “Data Divas.” The paper draws on feminist and women of color feminist studies of digital labor, infrastructure studies, and Science and Technology Studies to suggest several lessons from this fieldwork. These include economic lessons about where the value of clinical data come from, epistemological lessons about the forms of work that support the truth-value of clinical data, and methodological lessons about how to study health data ethnographically.