Abstract

So, what this really represents to us is an opportunity to make sure that certain communities who feel that they are not seen or reflected in the data can then start being seen or reflected in the data by the categories that are provided for people to choose among and being able to self-identify. Why does this matter? Because all of us here are deeply committed to understanding and remedying inequities we see in our society that exist on racial and ethnic lines. They exist on other lines too, but we are focusing on racial and ethnic lines. If we are able to have more accurate data that are presented on the basis of race and ethnicity, we are then able to more accurately identify inequities, and then hopefully, target inequities in our policy and programmatic practices.
How do we gather information about some of those issues? It all comes back to our ability to capture information about communities in the data. If a hospital is operating in a community but it is not aware that there has been a recent influx of immigrants and refugees who may speak Arabic, for example, in that region, they may not have someone on staff who can provide the translation services that are needed. That is one of the countless ways in which all of this plays out. The disaggregate piece is a critical part of getting to that.
Broad racial and ethnic categories do not allow for a full true understanding of our populations and can disguise underlying trends that can illuminate needed policy remedies that federal agencies really must be required to collect detailed race and ethnicity data. Although the current OMB standards allow for the collection of detailed race and ethnicity data, what we have seen is that agencies have treated the current standard as a ceiling and not a floor and have not proactively engaged in data disaggregation. This has been a big problem for many communities, including Asian Americans, Native Hawaiian, and Pacific Islanders.
For example, Asian Americans are made up of >30 countries of origin, 50 ethnic groups, and speak >100 languages. And as one of the fastest growing major racial and ethnic group over the decades and with a diverse history of colonization imperialism and migration, Asian American groups today have wide-ranging differences across almost all socioeconomic characteristics, as Maya mentioned. Without accurate data by detailed groups, some of the most disadvantaged in our communities are rendered invisible to policymakers, leaving their critical needs unmet. I will just give a quick example around the COVID-19 pandemic.
We know that the pandemic exposed disparities and unaddressed systemic issues for many communities. And for Asian Americans and Native Hawaiian Pacific Islander communities, COVID-19 was just another stark reminder that data disaggregation can be a matter of life or death. Again, not specific just to our community, this is true for all communities. But it was interesting to see that there were a couple of data collection issues around the pandemic, including some states who just failed to provide data on Asian Americans or Native Hawaiian Pacific Islanders. We also had other states that aggregated the two racial groups, thereby making invisible the larger risk that the Native Hawaiian Pacific Islander community often saw. I will just give a couple of examples.
In California, when you looked at the death rates per 100,000 people in 2020, the state total was 84. Combined Asian and Native Hawaiian Pacific Islander death rate was at 75. But for Native Hawaiian Pacific Islanders only, it was at 123. Then when you look at the data disaggregation, as Meeta was talking about, then looking at the Samoan and Tongan population, their death rates were even higher than the Native Hawaiian Pacific Islander rate, at a rate of 182 and 124, respectively. Similarly, in Wisconsin, we saw the Hmong population had a disproportionate health impact of COVID with respect to the number of cases, hospitalizations, and death.
It is important because if you do not understand the communities that are being affected the most, then the plans that you develop will not address their needs. They will not be culturally and linguistically appropriate. They will not reach the audience that they are meant to reach. It is important that we have this ability to require agencies to disaggregate data. I like to say, disaggregating data allows us to aggregate up to the larger community, but an aggregate data point alone does not allow us to understand the makeup or foundation of that data.
The research by the Bureau shows there has been an evolving mismatch between the racial categories in the Census race question and how Latinos report their self-identification. Many Latinos simply do not see themselves in the race categories in the race question. They either skip it or indicate that they are of “Some other Race.” The research by the Bureau has included focus groups, interviews, and an extensive study, the 2015 National Content Test, which is the largest field test conducted by the Bureau. It included 1.2 million households and oversampled census tracts with Latinos and other population groups.
In this research, the Bureau found that many Latinos embrace their Latino identity as their sole identification. In some cases, Latinos were indicating they were White, because they felt they had to provide an answer to the race question. Census 2010 and 2020 data also show the problems with this approach. In both censuses, nearly half (44%) of Latinos indicated they were of Some Other Race or skipped the race question. In Census 2020, Some Other Race became the second largest racial group in the country after White.
The large number of Latinos who either skip the race question or indicate Some Other Race also presents problems for data consistency between census data and other federal data. As noted, the census question on race includes the Some Other Race category, but this is not a category in the OMB standards. Thus, to achieve consistency between decennial census data and other federal data sets, including the Bureau's own population estimates, the Bureau basically assigns a race to Latinos who skip the race question or indicate Some Other Race. As a result, many Latinos are assigned to a race group with which they do not identify. Moreover, because of the statistical approach used by the Bureau to make this assignment, most Latinos are assigned to the White category. So, for many data sets, the population looks more White than it actually is. This is another serious problem that could have implications for data that are examined regarding health outcomes.
Ultimately, the Bureau's research shows that the combined question approach best aligns with how Latinos identify. The nonresponse rate to the combined question is significantly reduced. And <1% of Latinos indicate that they are of Some Other Race. The question also actually increases the share of Blacks who also identify as Latino. And there is no reduction of the number of Latinos who identify as both Latino and American Indian and Alaska Native. Finally, the combined question allows the collection of data on Latinos who identify with more than one national origin or subgroup. For example, instead of being able to identify solely as Salvadoran or solely as Dominican, respondents can indicate that they identify as both Puerto Rican and Dominican, or as Salvadoran and Mexican, which is another way to achieve better disaggregation. All of these improvements would allow the collection of data that could be used to better understand the nuances and complexity of health issues for the full diversity of the Latino community.
Although the American Community Survey (ACS) is very important to all of us, there are very real limitations on getting the aggregate data about our community from the ACS. In fact, that is an important point to be made here. Because I feel like my colleagues here can have a conversation about disaggregate data in a way that I cannot, when we talk about MENA populations. Because we are not there yet. We are not even collecting the aggregate data to talk about the need to get it to a detailed subgroup within that. So, for folks from the MENA region, and specifically, I represent Arab Americans who would make up the largest segment of population within MENA, it would be transformative.
It would be for the first time ever a category is added so that our folks can look at the census form, can look at the American Community Survey, find a MENA checkbox, check that. And within that, write their own ethnicity or national origin or race category should they identify with it. And Tina, the way you phrased it I think is important and another historic first. This is the first time we are able to say, we support the recommendations of the initial working group. They have suggested the addition of a MENA minimum reporting category, although they lack the clarity on whether it is an ethnicity or race.
But it is really critical that we talk about it as an ethnic category. It is a diverse region. We are talking about 22 members of the Arab League plus 3 countries that fall within that geography which are Israel, Iran and Turkey. And then within that, we have transnational communities, including Armenians or Assyrians and Chaldeans or Kurds. It is a wonderfully diverse part of the world that is represented here in the United States in a very real and meaningful way.
It is critical that it be an ethnic category, so people are able to identify both their ethnicity and the racial category that they may identify with. The Census Bureau found that, when they included a MENA a category, that it actually improved the counts for other communities as well. We saw an increase in the Afro Arab identification. We saw an increase in the Arab Latino community. So, when you have detailed questions and the ability to find yourself on a form, you invest in that form. It is a signaling bias. It does, I think, allow folks to self-identify in a way that is more representative of who they are.
I love data. They are important. They are critical. But without a combined question and this change in these race and ethnicity standards that has not happened in more than two decades, my community would be rendered invisible and then harmed for at least another decade by the lack of data.
You have some level of disconnect between the state standards that are applied and the federal standards that are applied. In a lot of instances, just moving the states to the old OMB standards would allow us to have more disaggregation than we do now.
If we are able to see revised standards that we are all hoping for and then move the states to those standards, which would have even more categories of race and ethnicity and intersectionality that we all want to see and we move the states to that as well, then we would be able to achieve the dream of being able to see our communities and understand the differences. So, I think the first step is really education of communities and education of our local and state officials and public agencies within those communities, those states, about why this matters and the fact that there are standards out there that have been thought about that, if they just move to that, it will allow for an easier process for them going forward.
In that same vein, that is one of the reasons why the initial proposed revisions as contemplated by the Federal Register notice to move that disaggregation data collection and reporting to a mandatory nature as opposed to a permissive nature is also important. Because it is a strong statement, again, to point to for advocates to be able to say, no, state and local, you should be doing this as well.
To that point, I would also say that what would be helpful is to have strong guidance and language from OMB. They currently have a guidance that they issued earlier last year that lifted up the idea that, under the current standards, you can disaggregate data. So, I would start there as something for today. Then, as we move along in the process and hopefully see revised standards that move to mandatory, there will be strong guidance from OMB about that as well.
We can continue to lift that up as model language for state and locals and to help with the education process that Meeta was talking about. Also, there are some places that have started to do this work already. California has done some work. New York. Look to those as potential models or at least lessons learned, things that worked well, maybe some things that did not. You can learn from what the Census Bureau has done in their data collection processes.
It will be important to have strong guidance and technical assistance at the state level. So, taking that information from other states, from the federal government, but also ensuring that, at the state and local level, that there is strong guidance from the state. Consistency is key. Being able to have comparable data across agencies is key.
The only way you get there is to have everybody working off of the same playbook, so that they are not asking the same question in five different ways, so that the answer is slightly different. The last thing I would just mention, CBOs must be engaged. They really are the experts on their own communities. Utilizing them to help check for whether the right examples are being used, ones that actually resonate in the community? And frankly, they are also your trusted messengers. They can also help make sure that people who have questions have a resource that they can go to in trying to figure out what is being asked and how to best answer it.
First of all, I want to lift up something that Maya mentioned, which are the instructions, the wording, and the format of the overall combined question. These need to really be clear about the distinction between race and ethnicity. The combined question also must clearly indicate that people should check all minimum categories that apply. With respect to the Black category, it is very important that the checkboxes and the examples used for that category clearly signal that Afro-Latinos should check that box if that is how they so identify.
In addition, another important issue for implementation is how to soundly tabulate data. How do you make it accessible to people? This must be done in a way where groups can get easy access to data at disaggregated levels, such as Afro-Latinos or Latinos who identify as Latino and another ethnic or racial category. Finally, the OMB and the Census Bureau must give guidance to localities and states on how to implement this in the foregoing ways. This guidance should include the need for an opportunity for agencies at all levels of government to do more nuanced and disaggregated analysis.
Finally, I very much agree with Terry's point that none of this can be accomplished in a sound way without close consultation with the full diversity of stakeholders in the Latino community. The OMB and the Bureau should work closely with diverse Latino stakeholders in determining how to do outreach about the combined question, including which are the best messages and who are the best messengers to explain the implications of the new question. This also means that any research that the Bureau does needs to have very robust and representative samples of Afro-Latinos and the full geographic racial and ethnic diversity of the Latino community.
The other point I would make is that, although this is happening on the federal level with regard to census and federal data collection, there are examples in states across the country where local health departments are actually ahead of the federal level on this issue, particularly with regard to collecting information on the MENA populations. I would point to the State of Michigan, for example, where when we talk about being rendered invisible in the data and the importance of public health data needing to respond more adequately.
We know, for example, there is a prevalence of diabetes in the Arab American community. We do not have the information specifically to tell us how much. What we can do is there have been certain ethnic enclaves across the country that have gone in and done some very specific research on their local communities. Michigan has been the example of that for many, many years. I am from Michigan, the highest concentration of Arab Americans in the entire country. That is not the same thing as, for example, Peoria, Illinois, which had a historically Arab American community there for generations.
It is very different than Paterson, New Jersey, or Orange County. You cannot take the ethnic enclave data and then extrapolate it nationally. But it is very heartening to see that those who have been on the local level and those state health departments that have sought to improve the health outcomes for their communities, they have been ahead of this. When the State of Michigan told us that Arab Americans were 2.63% more likely to test positive for COVID than non-Hispanic Whites, it is because of the research that they did in those areas. And how did they get that? Well, they used ACS data with all of its limitations when it comes to our folks. They used surname lists.
We have literally been running these hacks to get to a place of being able to pull this information and to produce what is necessary in these local communities so that the health outcomes can be addressed and improved for people. So, I am thrilled it is happening on the federal level. I think it is going to be difficult to implement on the local level. But we can certainly do it, and it is important to do. But I also think there are a lot of examples across the country where we can learn from what is happening at the state level up.
There are always sensitivities between and among jurisdictions. But it is always possible not only to have guidance, but also to convene groups to talk about, what does it look like to implement this at a state level or local level, if you choose to do so? And the other thing I would point out is many states have a chief data officer. So, chief data officers can form a learning network of their own. As Terry put it so beautifully, no one needs to do this alone. No one must reinvent the wheel at this moment.
Creating those learning opportunities and sharing opportunities where, as people try to implement either the revised standards or a version that is more applicable to their community or try to just implement part of OMB's revised standards, as they do that, learn from the others as to how they did it and why they did it. That is also part of the community we are trying to implement here, where you have the national partners working at that national level to see improvements, but really have that learning ability for the state partners to learn from what is happening at the national level but tailor it for the state level.
With the adoption of the combined question for the decennial Census, you would see a dramatic increase of Latinos who do not report any racial category identification. We want to hear from health data users about the implications of this increase for examining disparities or health outcomes within the Latino community. Are there going to be challenges by not having data that we might otherwise have? Now, I should note that, under the two separate question approach, we are not getting that racial data anyway because so many Latinos are marking off some other race. But we really do need to hear from health data users.
So, what is happening out there, in terms of federal agencies, where that additional piece is such a tremendous burden that it cannot be done? I think this is simple cost–benefit analysis. I would argue this is the same when we talk about why state and local communities are going to want to meet these standards. Because at the end of the day, it actually allows them to provide better services to their constituents. So, I think you are going to get buy-in from across the board on this, because it is more helpful. I think they would be hard-pressed to make a case that it is an undue burden and that it is too difficult to do it. We have made some pretty serious advances now, and I think we can do so using technology.
The burden will then be on the agency to apply for the exemption, to provide the proof as to why, in the cost–benefit analysis, as Maya said, that it is just too burdensome for them to do it. We will be suggesting that the process includes some type of publicizing aspect to ensure that interested stakeholders are made aware when an agency is inquiring or requesting an exemption. And finally, there must be some sort of time frame built in that would allow for the public to provide comments about an agency. In addition to OMB or the third party having an affirmative obligation to reach out to the communities that would be impacted particularly by that agency's decision, and then through that process, there could possibly be an opportunity to get exempted. But it should be not the default, and it should be a high standard for an agency to reach, in large part because of what Maya said, that with technological advances, it is a little bit hard-pressed to understand what the burden may be.
If an agency is running into an issue, why not use this as a foundation for building a more formal network perhaps? Or maybe even strengthening informal relationships, so that people can maybe do troubleshooting. And what might look like an incredible burden might not look so much like a burden when you get a chance to see how other federal agencies are doing it. Let us get much more collaboration. The OMB has an important leadership role to play in this sense. Not only, like I said, collaboration between the federal agencies, but also providing the technical assistance for state and local agencies that might be experiencing challenges.
You need to take equity into account when you are doing these analyses. So if you are saying, “The cost is high, but the benefit is minimal,” because you are looking at a small area or a small population, then that is actually unduly placing a burden on that small community for the very fact that they are a small community. And that is an inequitable outcome.
The second point is one of our recommendations is exactly what Ros just said, which is that OMB and the subcommittee for equitable data should really serve as a clearinghouse for ideas and best practices. Let us have the government stop working in silos and share with each other the best ways to do this and to collect the data. There is really creative work going on within some of the government agencies, but the other agencies do not know about it. If they are able to share that information, then they will be better able to understand that maybe that burden is not as high as they thought.
I think that is an important piece of this. The first federal agency to give us a MENA category was United States Agency International Development (USAID). And it was not because USAID was doing external foreign policy. It was because there were specifically people from the MENA region who worked at USAID who brought it to the director's attention that this did not exist. So, we had a group of Arab Americans who came together and helped make it happen at a federal agency before it was part of the OMB's initial working group recommendations. Sometimes things happen that way. And the agency of those individuals is important in the process.
Footnotes
Disclaimer
The views expressed here do not necessarily reflect the views of the Foundation.
Author Disclosure Statement
No competing financial interests exist.
Financial Information
Financial support for this roundtable discussion was provided by the Robert Wood Johnson Foundation.
