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(CNN) -
Black and Hispanic people in the United States are more likely to contract COVID-19 and are more likely to be hospitalized or even die from the virus.
But both groups are not yet getting enough tests and have not been sufficiently vaccinated in many states, according to new data compiled by Johns Hopkins University and shared exclusively with CNN.
Data from the U.S. Centers for Disease Control and Prevention (CDC) shows that black and Hispanic people are at least twice as likely to die from covid-19 than people non-Hispanic whites and nearly three times more likely to be hospitalized.
Black and Hispanic people are also more likely than whites to be infected with the coronavirus.
But Hispanics and blacks, with exceptions in some states, are more represented among those who have contracted COVID-19 or died from the disease than among those who have been vaccinated, according to data from Johns Hopkins University.
Without the data, authorities cannot know what to do to correct the disparities that can help the virus spread and the pandemic prolong.
With the data, the problem areas become clear.
Of the 37 states that track cases and vaccinations by ethnicity, Hispanics account for a smaller proportion of vaccinations than cases in all but four states.
And of the 39 states that are tracked by race, blacks account for a smaller proportion of vaccinations than cases in all but six states.
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Similar trends can be seen for testing, though only eight states track the proportion of covid-19 testing by race and ethnicity, along with cases and deaths.
For the past six months or so, Johns Hopkins University has analyzed demographic data on COVID-19 cases, deaths, tests, and vaccines made available to the public by states.
A new panel, released Tuesday, offers a state-by-state look at data disaggregated by age, gender, race and ethnicity.
States report this information to the CDC, but the resulting data sets are limited by federal reporting requirements, Beth Blauer, CEO and co-founder of the Centers for Civic Impact at Johns Hopkins University, told CNN.
States can use (and publish) the data they collect beyond these federal regulatory restrictions, and the Johns Hopkins University dashboard, which attempts to standardize the data that states publish, offers perhaps the most detailed demographic analysis of several covid-19 metrics.
But while data from Johns Hopkins University shows persistent disparities in covid-19 risk for certain demographic groups, it is also apparent that there is a persistent lack of available data necessary to track and improve those disparities.
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Inconsistent data complicates the effort
Compiling this data was "complicated at all times," Blauer told CNN.
"It is indicative of a lack of leadership and a lack of focus on data standardization."
Johns Hopkins University found inconsistencies in the ways that racial and ethnic groups are defined between states, sometimes even across different metrics within data from the same state.
Additionally, states have six different ways of tabulating tests (the number of people tested or the number of samples tested, for example) and also six different ways of counting vaccines.
Poor data collection frameworks are present across the country, which is a larger referendum on the US public health system, Blauer told CNN.
The proportion of data that has demographic details attached has been fairly consistently below 60%.
"It shows that the system itself does not learn," he said.
Regardless, data collection is a step in the right direction, experts say.
"We always say that data is what drives action," Emily Zylla, senior researcher at the University of Minnesota State Health Access Data Assistance Center, told CNN.
And once it's collected and published, the data must be linked to specific strategies and interventions to bring about real change, he said.
Illinois, for example, is one of the few states that tracks both testing and vaccination data by race and ethnicity.
"By collecting demographic data for tests, cases, and deaths, we can see some of these hardest hit areas and deploy more resources, such as educational materials, community health workers, and testing. Similarly, vaccination demographics help inform where else specific efforts are needed, "Melaney Arnold, head of Public Information for the Illinois Department of Health, told CNN.
"With lower vaccination rates among the black population, we have reached out to places of worship and community organizations in these communities to establish mobile vaccination clinics, as well as black fraternity and sorority organizations to help instill confidence in safety. and efficacy of vaccines ".
Whites are vaccinated against COVID-19 at a higher rate than Latinos and blacks in the US.
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Despite data limitations, trends emerge but are not corrected
"The data, even in its limited nature, really confirms that if you are poor and if you are black or brown in this country, you are very limited as to where you can access basic resources to even navigate personal decisions around covid." Blauer told CNN.
"Even when we knew there were significant problems with access to testing, we did not correct it in the vaccine distribution."
With one exception in Missouri, each of the states in which Black and Hispanic people are undervalued are also states in which Black and Hispanic people are under-vaccinated relative to their proportion of Covid-19 cases.
It took the federal government a while to require states to collect demographic data for testing, Zylla said, and even after it was necessary, collecting that kind of data requires people to share information about themselves and involves some level. trustworthy.
"Getting to that level of data doesn't happen overnight," he said.
The technology and resources that allow for comprehensive recordkeeping differ by state, and Health Departments are also limited to other tasks related to the pandemic.
"Local leaders are also frustrated. They carry the burden of having to be front-line first responders," Blauer of Johns Hopkins University told CNN.
"There are bright spots at the local level, in both states and local communities. The question is, 'Are we going to extrapolate these lessons learned?'
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