“Latinos are dying in this pandemic, and are likely being undercounted due to the different ways hospitals and government agencies collect health care data,” Ramirez says. “With these undercounts, federal government officials can withhold vital resources like testing kits that are desperately needed in these underserved communities. These inaccurate Latino counts hurt everyone, hampering our ability to get this virus under control.”
Centers for Disease Control and Prevention (CDC) officials say gaps in their data come from their dependence on local agencies. The CDC cannot force local health agencies to collect detailed data about every person who tests positive. These local governments are overwhelmed by the pandemic and lack the resources to investigate the characteristics of every individual who falls ill.
Chicago, with a sizable Latino population, is a microcosm of this problem.
Jose Rico, the chief partnerships and initiatives officer for United Way of Metro Chicago and a member of the Mayor’s Recovery Task Force, has seen how systemic inequities in Latino health care are hurting the ability to address the pandemic in his city. In Illinois, according to the state’s Department of Public Health, Latino’s have the highest covid-19 infection rates statewide.
Early in the pandemic, Rico heard from health-care centers that Latinos were testing at a higher rate even when testing was restricted to the few, but the numbers that were reported at the city and state level did not match up with what people were seeing in the neighborhoods where he was working.
In early May, there was a large increase in cases, both because testing became more available and because many more Latinos were being counted. When Rico asked hospitals and health centers to combine their individual data so they could analyze a complete data set by neighborhoods and ethnicity, they made a startling discovery: the hospitals all count race and ethnicity differently. Many Latinos were counted as non-Hispanic white.
Federal and local governments and hospitals all count race and ethnicity differently. In many critical forms and submissions, including the census, the government race category forces Latinos to choose among white, black or African American, Asian, American Indian and Alaska Native, Native Hawaiian and Pacific Islander. There is nothing for a Latino to check except the lonely box marked “other.” Latinos are literally “othered” in these official government counts.
Federal forms allow Hispanics to be counted in the ethnicity category, but this is not always the number used for policy development or resource allocations.
One study of how hospitals collect race and ethnicity data found “collection is fragmented and incomplete within and across organizations. A major factor affecting the quality of data is the lack of understanding about how best to collect this information from patients.”
A Harvard study that looked at the accuracy of race, ethnicity and language preference in electronic health records found that, given an opportunity, patients were more likely to self-report Hispanic ethnicity than was reported in the electronic health records. There are key discrepancies between what hospital intake forms show and how patients actually self- identify. The count is further muddled because 37 percent of Hispanics self-reported identification with at least one other racial or ethnic group. Researchers concluded that there are important inaccuracies and there needs to be better processes to document race ethnicity in electronic health records.
Public health experts say Latinos may be more vulnerable to the virus as a result of the same factors that have put minorities at risk across the country. Many have low-paying service jobs that require them to work through the pandemic, interacting with the public. A large number also lack access to health care, which contributes to higher rates of diabetes and other conditions that make this population more susceptible to complications from the virus.
Rep. Raul Ruiz (D-Calif.), a physician, knows first hand the health-care challenges facing Latinos during this pandemic.
“First of all, Latinos are more likely to be employed in essential jobs. Meaning that they do not have the luxury of working from home,” he says. “They have to go out into the workforce. Second of all, these are precisely the workers that needed protections in the workplace even before covid-19. Farmworkers for example have one of the highest injury rates, one of the highest hazard rates in any profession and they are not protected.”
As a result, the number of Latinos with covid-19 is staggering. In Iowa, Latinos account for 24 percent of coronavirus cases although they are only 6 percent of the population.
In Chicago, the inability to get an accurate count of how many Latinos have the coronavirus has real resource implications as local and state health officials respond to the pandemic. Although the state and city are flattening the curve, the number of Latino deaths in Chicago has surpassed the death toll of other groups but the resources to address these high levels of infection are still lacking. Today, Rico and Latino leaders in Chicago are leading an effort to get a state executive order to correctly identify Latino racial categorization in state agencies.
Inaccurate data in a pandemic can lead to missing vulnerabilities and predispositions to diabetes and heart disease, which are destructive when combined with covid-19.
“At the end of the day, local governments are not able to make the necessary resource allocations for combating this virus if they do not know who or how many people are actually sick in a given area,” Rico said. “This should be simple, give people the option to self-select Latino on these forms. We get enough othering in real life, let’s make it simple to include us in these counts.”
Kristian Ramos, former communications director for the Congressional Hispanic Caucus, is a freelance writer and founder of Autonomy Strategies, a media consulting company.