Massachusetts for the first time Wednesday made public racial and ethnic information about the victims of the new coronavirus, but data was so incomplete it provided little insight into the pandemic’s impact on communities of color that have been hit hard in other states.
The data, released as Governor Charlie Baker’s administration faced increasing pressure to be more transparent about the victims of the outbreak, included racial and ethnic information for less than one-third of the 433 people who have died and the roughly 17,000 people who have tested positive. The limited statistics showed that Blacks and Latinos had disproportionately higher rates of infection, although the lack of data made it difficult to draw firm conclusions.
At a press conference with Baker, Secretary of Health and Human Services Marylou Sudders acknowledged that collecting racial and ethnic data was essential to helping the state determine “on whom the burden of illness and death is falling.”
“The data on race and ethnicity is far too incomplete in far too many cases,” Sudders said. “We are taking steps to improve the submission of these key data points.”
Sudders announced a public health order Wednesday requiring for the first time that health care providers and laboratories collect race and ethnicity data for the new coronavirus. The directive came more than two months after Massachusetts confirmed its first confirmed case of COVID-19, on Feb 1.
The Massachusetts Department of Public Health is the primary agency responsible for collecting and compiling test data from around the state. The agency had always asked for racial, ethnic, and other demographic information, but submission of the data had been voluntary.
The limited details released Wednesday showed that Latinos accounted for 23 percent of cases, a number higher than the 12 percent they represent of the state’s population. Black patients made up 18 percent, which was also disproportionately high for a group that accounts for 9 percent of the state’s population.
However, white and Asian patients were underrepresented. Whites accounted for 55 percent of confirmed infections but represent 71 percent of the state’s population. Asians were 5 percent of infections but account for 7 percent of the state’s population.
The scant data for fatalities more closely mirrored the state’s population. The number of whites were slightly overrepresented and Latinos, Blacks, and Asians were all slightly underrepresented. The state did not provide any breakdown of the 87,500 people who have been tested for the virus, a metric that experts say is key to determining whether testing has been equally available to people of all backgrounds.
Data on race and ethnicity is crucial to understanding whether access to testing and information about COIVD-19 are equally available in all communities. It’s especially important for communities of color and immigrant neighborhoods because of a long history of mistrust of government and health care in these areas, specialists say.
The issue has gained national prominence in recent days as it became clear that the pandemic was hitting Black and Latino communities especially hard. A handful of other states had been releasing racial and demographic data, but the Baker administration had not responded to requests from the Globe and others to provide the information.
Manny Lopes, president and chief executive of the East Boston Neighborhood Health Center, the state’s largest community health center, was not surprised by the sparse data pinpointing racial impacts.
“Hindsight is always 2020,” said Lopes, who is also chair of Boston’s Board of Health. “We should have suspected that the groups of folks who have been disproportionately impacted with health care gaps are communities of color and quite frankly, we don’t need data to tell us that any more, we need interventions.”
The health center serves 90,000 patients in surrounding communities, roughly 70 percent of whom speak Spanish. The virus has disproportionately affected its patients, too, with roughly 80 percent of those infected being Spanish speakers.
“It’s good that the administration recognizes this is important now, and where we need to put in more resources to get people to understand the virus symptoms and conditions,” Lopes said.
Nate Horwitz-Willis, the former health director for the town of Plymouth, said the state’s disease-tracking computer system needs to be improved to remind users that race information is critical.
“A trained public health professional will understand that you need to take standard information about a person’s background in order to understand the whole picture of health equity,” said Horwitz-Willis, who also is an assistant professor of public health practice at Massachusetts College of Pharmacy and Health Sciences.
Dozens of private laboratories, hospitals, and other health partners conduct COVID-19 tests and share their findings with the state.
The laboratory at the BROAD Institute of MIT and Harvard offered an example of just how difficult it can be to track race and ethnicity data. The lab, which has processed nearly 6,000 tests in Massachusetts, said in a statement that it was not its job to record race or other vital patient data — despite the assertion from the state’s health secretary Wednesday that labs are entering race data into the state’s tracking system.
“Our role is to process samples sent to us from clinics and hospitals. We do not interact with patients directly and as such, do not receive demographic information on the individuals whose tests are being processed,” said David Cameron, a BROAD spokesman.