Four months into the vaccination rollout, ethnicity and racial data collection continues to lag

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The U.S. has made little progress in collecting Covid-19 vaccination data by race and ethnicity over the last four months, despite continued efforts by President Joe Biden’s administration to vaccinate communities of color. The incomplete data make it hard to assess his progress.

As of Friday, the Centers for Disease Control and Prevention had recorded race and ethnicity data for just over half the country’s vaccinations, a figure that has increased slightly since February. Demographic data for age, which are far more complete, have increased by about the same amount in that time.

Covid-19 has hit racial and ethnic groups harder — Latinos and Native Americans have the highest death and hospitalization rates, but African Americans are not far behind, CDC data show. The disproportionate impact became clearer when states improved reporting of racial and ethnic data about cases, hospitalizations and deaths.

An NBC News analysis of states’ vaccination websites found that all but two states were publishing race data for those receiving vaccinations. But the quality of race data is a mixed bag for almost every state that is reporting; at least four states were missing race data for a quarter of their vaccinations, and two states, Montana and Wyoming, were not publishing race data at all.

There are missing pieces even within the data that are reported. States will often lump together populations, such as Pacific Islanders and South Asians, or combine small populations from Indigenous backgrounds into a category of “other,” creating an unreliable illustration of exactly who is getting the shots.

A hodgepodge of implementation and policy leads to situations like those in Virginia, where 40.5 percent of vaccinations lack race data, or in Louisiana, where the percentage of race reporting accounts for about 98 percent of its vaccinations but lacks ethnicity data, which would leave out the state’s Hispanic population. The state did not initially collect data about ethnicity.

Experts and government officials say the missing racial data make it difficult for leaders to identify problems in vaccine distribution and harder to combat vaccine hesitancy, which can make things worse in already underserved populations.

Some state officials point to logistical hurdles that prevent the collection of race data, such as software limitations. Some vaccine recipients declined to answer demographic questions. But experts and government officials agree that race and ethnicity data are necessary to move the country’s vaccinations efforts forward.

“This data helps CDC measure our nation’s progress in controlling the pandemic and allows us to quickly identify the need for additional support for health departments,” Judy Qualters, co-lead of the CDC’s Covid-19 Vaccine Task Force Data Monitoring and Reporting Section, wrote in an email.

More data could help communities and the country design targeted campaigns to reach groups that are not getting vaccinated, said Nancy Krieger, a professor of social epidemiology at Harvard University. Across the country, according to data from the Kaiser Family Foundation, Latino and Black vaccination rates are lagging behind that of whites.

After failing to have complete data about the race and ethnicity of people who were being hospitalized and killed by Covid-19, the CDC now does not have complete data about the race and ethnicity of people who have been vaccinated, according to its data.

The percentages of non-reporting for age and gender are far less than for race and ethnicity: As of Friday, less than 10 percent of the CDC’s vaccination data did not have age or gender data attached, while more than 40 percent did not have racial demographic data.

Kate Fowlie, a spokesperson, said CDC vaccination data are incomplete because of a combination of people not reporting, providers not collecting and state laws or policies that prohibit sharing the information with the federal government. The CDC is working with the states and other jurisdictions to review and improve data collection on a weekly basis, Fowlie wrote in an email.

Several factors contribute to the lack of data in Virginia, including a sheaf of early vaccinations that the race and ethnicity questions were not part of, as well as current vaccination providers’ inconsistent reporting of the data.

Virginia uses a vaccination information system to capture its Covid-19 vaccination data, the same one it has used since 2005 to track other vaccinations, such as those for the H1N1 flu.

Covid-19 vaccination providers are required to use the system, said Christy Gray, director of the state Health Department’s Division of Immunization. If they have data about race and ethnicity, they are required to report it to the CDC, Gray added.

Race and ethnicity are information “we have always been trying to capture,” but they are not required fields, she said. According to an analysis of the state’s published data, Virginia is missing more than 40 percent of its race vaccination data, one of the highest figures among the states NBC News analyzed.

Many vaccination providers are still using paper and do not have electronic records that “would have eased the efficiency of reporting that information,” she said. “We’re hoping that every provider is at least asking this information, and it is a routine thing to ask, but they’re not withholding the vaccine if somebody decides not to disclose the race and ethnicity.”

During Virginia’s first phase of vaccinations, for health care workers and long-term care residents, race and ethnicity reporting was “almost nonexistent” because vaccination information was captured in employer-based systems, in which race and ethnicity are not standardized fields, she said.

The lack of data “is leaving us somewhat blind to where there might be problems that we can address.”

Christy Gray, director of the Virginia Health Department

“The ratio of how much race and ethnicity we know has increased, especially since [the first phase], but we definitely have room to improve,” Gray said. The lack of data “is leaving us somewhat blind to where there might be problems that we can address.”

The medical field has long recognized the need for better race and ethnicity data to diversify health care delivery and medical research and shrink health care disparities.

But unlike age, race and ethnicity data wade into the country’s discomfort with racial and ethnic identity and its racial divide.

Experts said asking people to identify their racial or ethnic backgrounds runs into antagonism among some people, who resist identifying themselves as anything other than American. Others equate doing so with creating “preferential” treatment or opening doors for discrimination and targeting. Some fear that they may have to create or fund programs because of what more detailed data show.

Tabulating race and ethnicity data has its challenges. Categories come and go, and preferred names change. Some systems restrict racial identity choices to one category, forcing multi-race people to choose one. Despite guidance from the CDC and the Census Bureau, local jurisdictions sometimes create their own categories, which then make their information hard to compare with that of other locations.

The word “Hispanic” was first used on a census questionnaire in 1980, and starting in 1997, the Office of Management and Budget required federal agencies to use a minimum of five race categories: white, Black or African American, American Indian or Alaska Native, Asian, and Native Hawaiian or other Pacific Islander. (Hispanic is an ethnicity, and Hispanics can be of any race.)

The change would also allow census respondents to identify as more than one race.

A sixth category would eventually allow for the use of “other” in the 2000 and 2010 census questionnaires.

The CDC marks race and ethnicity as required for both states and pharmacy vaccination providers, such as Walgreens and CVS. The CDC gives states wiggle room to omit race reporting because of local policies or laws or if the race and ethnicity data are not collected by the vaccination provider. The vaccination consent form for Walgreens lists all of the required CDC fields.

Hawaii’s Health Department lists percentages for race, including Native Hawaiian and Pacific Islander, but does not include information for ethnicity, making it hard to assess the state’s Latino population. According to the state’s site, the race and ethnicity of 18 percent of its vaccine recipients are unknown.

Conversely, an analysis of state health websites shows that only 18 states are counting Native Hawaiian or Pacific Islander, a categorization for those whose origins are connected to the original peoples of Hawaii, Guam, Samoa or other Pacific islands. A half-dozen states combined that population with Asian. While the two are often grouped under AAPI, the category is not one that the CDC uses for vaccinations.

When populations fall below a certain threshold, local governments may not count them and instead bucket them into “other,” even consolidating disparate ethnic populations.

New Hampshire, which is 93 percent white, began reporting race and ethnicity data to the public only in the second week of April, said Jake Leon, a spokesperson for the state Department of Health and Human Services. Before then, the data were provided upon request, he said.

Nancy Nydam, a spokesperson for the Georgia Public Health Department, said the state is reporting data to the CDC “when we have the data.” But she said that “often the data is incomplete or not provided at all.” According to an NBC News analysis, less than 6 percent of Georgia vaccinations did not have race attached.

Georgia and New Hampshire are among the states doing the best at reporting vaccination race data. So is New Mexico, which has been outperforming the rest of the country in vaccinating its population, as well as in reporting race and ethnicity.

State officials said they have focused on people disproportionately affected by the coronavirus. New Mexico’s population of about 2.1 million is 49 percent Latino and 11 percent Native American. Whites who are not Hispanic are about 37 percent of the population. About 62 percent of the state’s adults have gotten at least one vaccination shot, according to CDC data.

David Morgan, a spokesperson for the state Health Department, wrote in an email that New Mexico made race and ethnicity a required field for data collection, following CDC guidance. The information is captured when a person registers, or the information is captured at a doctor’s office or on the consent form.

Of the nearly 1.6 million doses administered in the state so far, only 8 percent lack race data, according to data provided by the Health Department.

Over the last few decades, collection of race and ethnicity data for medical research and purposes has improved tremendously, said the University of Miami Health System’s chief of general medicine, Dr. Olveen Carrasquillo, a national expert on health disparities.

Carrasquillo said he struggled in medical school and in his career with the lack of detailed data for his research on Latino health.

Such data have been valuable in many cases, some showing incidents of diabetes among Latinos or development of hypertension at earlier ages and the role of racism in health outcomes.

The incomplete Covid-19 data delayed recognition of the virus’s disproportionate impact on communities of color.

“It’s critical for us to know, is the Latino community getting vaccines at the same rate as everyone else?” Carrasquillo said. “Do we need targeted initiatives? Do we need targeted outreach? Is it access to care? Is it vaccine hesitancy? Without data, you can’t know any of that.”



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