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The U.S. needs to engage communities around BIPOC data [statnews.com]

 

By Warren Kibbe and Giselle Corbie-Smith, Photo: Mario Tama/Getty Images, November 22, 2021

Nearly 170 years ago, a physician who had been born into a poor family used data to stop a cholera epidemic in London’s then-marginalized Soho neighborhood. By interviewing residents and plotting the locations of those who were ill on a simple map, John Snow, today seen as one of the founders of modern epidemiology, identified a shared water well as the source of cholera. Removing the pump handle, which stopped the epidemic by cutting off the supply of contaminated water to the community, is one of epidemiology’s legendary stories.

Although the scope of the Covid-19 pandemic is magnitudes larger than that historic cholera outbreak, those most affected by it are marginalized people. And just as data enabled Snow to ask and answer the right questions to solve a problem, collecting data has similarly helped countries around the world fight the pandemic. But there is a big gap: lack of data representing communities of Black, Indigenous, and other people of color (BIPOC).

This dearth of data has at least two origins. One is that researchers and data collectors don’t ask about race or ethnicity because of concerns about privacy, sensitivity, and skewing participation. Another is that some members of BIPOC communities, particularly those who are most marginalized, are often reticent to share data with researchers. Efforts to investigate health disparities often highlight deficits in BIPOC communities that have limited impact in solving problems at the community or individual level. These harms are real and continue to occur today.

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