Abstract

Expert Panel
I cannot take credit at all for this incredible issue because it was in process when I became the editor in chief of Health Equity. So, I do want to shout out the Mary Ann Liebert publishing staff who supported the journal, Dr. Grace Ma, who did a heavy lift with Dr. Adam Chen and his team to really be able to thoughtfully and mindfully go through the multitude of submissions that we receive for this special edition of our journal.
There are 15 different articles, not including our introductory editorial, which includes short reports. There are research articles. There are three different perspectives. There are several editorials on AANHPI health and health disparities. And it is very very important that we were very intentional around Asian American, Native Hawaiian, Pacific Islander—really disaggregating different groups.
We received articles from across the spectrum of individuals. And we got so many that we had to publish some in the original edition of Health Equity outside of the special edition because the quality and the caliber of these topics were so important to us that we wanted to make sure that they were amplified because the science that was behind these articles were really important. Many of the articles addressed health disparities.
They highlighted community-engaged solutions, and some highlighted key policy priorities that were necessary. And some really amplified and identified the shameful anti-Asian hate, violence, and other factors that this community has disproportionately borne. So, it is my great privilege and honor to know that we have in our midst Krystal Ka'ai, who is the executive director of the White House Initiative on AA and NHPIs, and is part of the Presidential Advisory Commission on Asian Americans, Native Hawaiians, and Pacific Islanders.
In this role, she is responsible for advising the Biden-Harris administration on the coordination and implementation of federal programs and initiatives to advance health equity justice and opportunities for AA and NHPI communities. Prior to joining the initiative, Krystal worked on Capitol Hill for over a decade, including serving as the executive director of the Congressional Asian Pacific American Caucus for 8 years.
She also previously held positions with the United States Senate Committee on Indian Affairs, the state of Hawaii and their office of Hawaiian Affairs, and the National Japanese American Memorial Foundation. Krystal was born and raised in Hawaii and is the first Native Hawaiian to ever lead the White House Initiative on AANHPI health.
I am so grateful that you chose to spend your time with us today, and I am very much looking forward with your discussion with Dr. Chen.
It was most recently reauthorized and expanded to be its largest in scope in history under the Biden-Harris administration last May during AA and NHPI Heritage Month, during which the president signed Executive Order 14031, which is tasked with advancing equity, justice, and opportunity for our AA and NHPI communities. And for the first time in history, the name Native Hawaiian is explicitly listed in the Executive Order.
So, for me, as someone of Native Hawaiian descent, this is especially meaningful to be able to lead this initiative under its expanded and broadened charge. We are focused on a number of different priorities under this administration—everything from advancing health equity, of course, to addressing the alarming surge in anti-Asian violence and hate we have seen over the course of the pandemic, to looking at long-standing inequities, like the need for greater data disaggregation and language access for our extremely diverse communities that represent the broader AA and NHPI umbrella.
We also are focused on things like economic equity, educational equity, and housing—so many different components that really do tie very well into addressing social determinants of health. Environmental justice is also included in that. So, for us, the most immediate priorities have been to address the long-standing inequities and disparities that have really been exacerbated over the past 2.5 years of the COVID-19 pandemic.
We know that the AA and NHPI community, long before COVID, faced a number of health disparities. Like cancer rates, for instance, looking at diseases like viral hepatitis, and hepatitis B in particular, where our communities have been disproportionately impacted. But we also know that throughout COVID, unfortunately our communities were oftentimes overlooked because of the lack of disaggregated data, which oftentimes I think fed into this false narrative that Asian Americans, Native Hawaiians, and Pacific Islanders were not facing the same COVID-19-related health inequities as other communities of color, when in fact that is not true.
This is especially true for our Native Hawaiian and Pacific Islander populations. I see that we have one of our [President's Advisory Commission on Asian Americans, Native Hawaiians, and Pacific Islanders] Commissioners, Dr. Raynald Samoa, who is here and who will probably speak a little bit more to those findings. But, I think that was really a challenge for us from the federal government's perspective was being able to ensure that we were doing our best to have a really robust pandemic response, while also addressing the unique needs of diverse populations.
This includes making sure that we are doing all that we can to address the really unique needs of diverse communities that fall within the broader AA and NHPI umbrella, and in particular, our Native Hawaiian and Pacific Islander communities who faced some of the most significant hospitalization and mortality rates from COVID-19 out of any racial group. Not just among our broader AA and NHPI group, but even compared with other racial and ethnic groups.
I think a lot of the work we have been doing through our White House Initiative, as well as the President's Advisory Commission, has really been to highlight the unique disparities and needs of our diverse populations, and to ensure that we are doing all that we can as we continue to recover from COVID, to get appropriate resources.
To address some of those long-standing systemic challenges that have long plagued the community, we have focused on the need for greater data disaggregation to truly understand where those disparities are. Another priority is language access, given that about a third of our population is limited in English proficiency. There are so many different challenges that we are facing, I think, as a result of COVID that have really been exacerbated over the past 2.5 years.
Mental health is another one that we are really looking to address, especially in response to the rise in anti-Asian hate we have seen. We know that there are so many communities and individuals who are traumatized from everything that has happened over the past 2.5 years, and still do not feel safe in this country. And so there are a lot of different priorities that we are looking to tackle under this administration, and I'm very heartened by the commitment we have received from the very top, from our President and Vice President, who truly see our communities, who understand our communities, and have made sure that through our Initiative, as well as the Commission, that we have the resources that we need to tackle these challenges.
I think one unique advantage we have about being housed within HHS is really being able to look at how we are promoting health equity beyond just the course of this first term of the administration, and really taking that broader perspective of how we can create fundamental change that will have a lasting impact for decades and generations to come. We are working very closely with the Healthy People 2030 initiative, for instance.
We are also looking at ways to collaborate across the department—working with the Substance Abuse and Mental Health Services Administration on mental health issues; working with NIH on research; working with different components, like the CDC and so many others to really make sure that we are doing all that we can to uplift the challenges that our communities are facing, and also to ensure that we are getting adequate support to the communities, whether it is in the form of capacity building and grants that can go out to community health centers that are serving AA and NHPI populations, or other entities that are providing critical culturally and linguistically appropriate services and support to our populations.
We are also looking at things across the government. So beyond just HHS, we know that there are so many other components of the federal government that have equities in terms of doing all that we can to promote the health and safety of our communities. And so that is something we are doing—working with the Department of Justice, for instance, on ways to ensure safety and justice for our communities who have been impacted by hate crimes and violence; working with the Department of Education to promote not just educational attainment, but also looking at bullying in schools.
So, these are just a couple of the examples of how we are using our platform and our interagency coordination, as well as our external engagement with the general public, to really ensure that we are not only sharing resources from the federal government and getting that information out to the public, but also creating meaningful policy, programmatic, as well as outreach initiatives that can really help to get resources and support into the hands of our AA and NHPI communities all across the country.
In light of that, what are you excited about? What is on the horizon that you want this audience to know that the administration is working on?
President Biden signed an executive order on his first day in office to do this. And one of the key components of that racial equity Executive Order was the creation of an Equitable Data Working Group. I know this is not the most interesting of topics, per se, but for me, the data disaggregation work that is being done within the administration is truly historic. A lot of it is being done quietly, but there has also been a lot of robust engagement with community stakeholders, data scientists, and a number of folks internally within government, as well.
I am really excited about that, because we all know that we cannot really promote equity if we do not understand where the challenges are, where the disparities are. So that data are so critical, in my opinion, to our community—knowing that for so long, we have been historically lumped together and seen as a monolith, when in actuality, our AA and NHPI populations are so diverse and so robust.
Really being able to understand and drill down into the data and ensure that we have the appropriate tailored solutions to address so many of the significant disparities that have long plagued our various ethnic populations, I think, is really going to have lasting impacts for generations to come.
We cannot intervene, we cannot fund, and we cannot really address things if we are not counting them, right?
This is something that the administration is working to tackle. We have literally infused trillions of dollars into the economy through a number of historic pieces of legislation—everything from the Inflation Reduction Act that the President just signed into law earlier this year, to the Bipartisan Infrastructure Deal, to the American Rescue Plan Act, and so much more. And so there have been a number of investments that have been made to really tackle so many of these inequities that were exacerbated throughout COVID, including increasing broadband access.
A ton of money was also infused into community health centers, as well as into telemedicine. Workforce diversity is also a key component. We know that if we are looking to the future, especially as we recover from COVID and look at ways to improve our systems overall, that we really do need to have a robust health care workforce, and one that is also culturally and linguistically competent.
Through a number of the pieces of legislation I mentioned earlier that have since been enacted, we have really made a concerted effort to ensure that we are targeting federal dollars, programs, and initiatives toward these efforts.
The first question I have is, what motivated you to write your piece for this special edition? What was that passion that really drove you to want to write and submit this piece?
The second question is, what do you think are the most important findings? How do you want people to use your work? Particularly policymakers, funders, patients, people with lived experience. Adam, could you start us off with what motivated you to be the guest editor and what were your most important research findings?
The framework we come up is a cultural safety framework that we wanted to continue to embrace. We have seen these anti-Asian issues coming up during the pandemic. But how can we really tackle this racism at all levels? Sometimes, it may not be violent. It could be implicit bias in our health care system policies that are really reflecting the limited access to care and the resources that could be improving the well-being of the population.
Ms. Ka'ai just mentioned the language access. So, language access could be reflected in many areas, not only in our daily life. It could be in the justice system, could be in the health care access, treatment, prevention, et cetera. We wanted to really focus on the capacity building in terms of culturally, and linguistically appropriate research and community engagement. I think that is very important for us to continue to improve advanced health equity. And the other issue that we also addressed in this article is data disaggregation. What we are specifically concerned by is we do not have better tools to really disaggregate. We are really happy to see the leadership promoting data disaggregation.
But at the end of the day, when the researchers or our community come up with these research studies, where are the resources that can really cover in the different languages, and culturally compatible measurements that could capture meaningful data? Because there is so much diversity among the Asian Americans, Native Hawaiians, and Pacific Islanders. So, having better tools to have granular disaggregated data is so important. The last topic that we discussed in the article is leadership representation. I think all these issues can be informative for policy makers, but also needs a lot more resources to make it happen.
So, we had all this looming around us with absolutely no idea how to address them specifically because of the lack of disaggregated data. So, when COVID came around, we wanted to make sure that this was not going to be the excuse again, that statistical limitations were not going to be justification for the omission of health outcomes. Because what we found out in the pandemic—which is probably true before the pandemic—was invisibility means death.
And what was very interesting was when we started working with the national group, the American Association of Asian psychologists, we had to figure out how to overcome the obstacles that we have been told prohibited the reporting of NHPI data. So, we used a very culturally centered community-approved approach. We went to the community from the get-go. They were involved with the initial design of the study. Traditional sampling frame design does not work with Native Hawaiians and Pacific Islanders. We had to use one that was more community informed. We had to specifically focus on our community's expertise on regionality, on NHPI subgroups, on behavior. That was how we were able to come up with a study design that sampled what we wanted to sample.
The initial assessment was just to look at what was the experience of NHPI during the pandemic. From that, we were able to discern some things that were very important for us to fight COVID for these communities. Once we started to look at the vaccine hesitancy data, it became very clear as to what was prioritized that we needed to push out there to inform local health, state, and federal agencies as how to help support these communities.
One of the things we noticed was there were very common among other communities of color. The socioeconomic gradient that persists with a lot of disease outcomes—the more money you make, the more educated you are, the more protected you are. We saw a lot of that with some of our larger Pacific Islander communities. But it was not consistent.
There were times when the socioeconomic gradient did not hold up. It was not about filtering information through an economic and educational lens. It was filtering information, period. There were sections of the community that were—regardless of their income and their education—not partaking in protective health behaviors, or at least not likely to, based on their hesitancy.
When we were able to push that out, we were able to show that the NHPI community is not a monolith. You cannot have general outreach efforts based on the top three populations because you will miss a lot of the ones that are suffering as much. There are the Marshallese in Arkansas, there are the Tongans in Utah. And if you use a one-size-fits-all approach to all Native Hawaiians and Pacific Islanders, you are not going to move the needle very much. So, that was such a successful effort.
This community-based leadership within study design, dissemination, outreach is how I want that data to be used. When you come up with an excuse of, we have statistical limitations regarding anonymity, that we cannot report data—we can tell you that that is not true. Or that you can overcome those obstacles. And the community should be your first stop to overcome those obstacles. A lot of what we are looking at in regard to outreach in NHPI communities where they come from research, where they come from agency outreach, is aimed at academic centers, and using them to reach out to community organizations. They do not need to do that.
You can center your research and center your advocacy or your outcome approach through the community. And our study, or our survey, and our reports show that it is a model that works.
And yet you have a fair amount of hesitancy, even with that in the background. I think what was able to happen with our community leadership was they were able to overcome a lot of that hesitancy, and in a lot of those regions, the vaccination rates were over 90%. That is what I mean by starting with the community, because not only can they look at the assessment, but they can also overcome the obstacles that are brought about by that assessment. So, I hope that we learned something from COVID. That the other chronic conditions that have been pre-existing health disparities for NHPI communities, such as cancer and diabetes—you can apply this same approach to. Just because the urgency is not there, it does not mean that the rates are not high.
Because when we called up our patients, they were scared, they were committing suicide, they were depressed, and they could not see their doctors. We had to get them into telehealth, and it was so much work to do that. I do not think those stories are ever told. And part of the problem why we have this misleading narrative around the model minority myth, or that COVID only impacts black and brown communities, is because in part we are not sharing our stories.
So, we thought it was a call to action for us to write this up, and we did. Some of the key findings are its focus not just on the data disaggregation, but the compounded effects of language barriers in a time when everything went digital and our patients were left out. Like many other communities, they were left out on the sidelines, while they were blamed for the virus and ignored when it came to much needed services. We needed to tell that story. Some of our findings really showed that even in the payment system for health care providers, like ours, which is a community health center, they wanted us to switch over and everyone to be on video. Well, not all things are created equal. And it was important for us to advocate that they held on to audio visits. Being able to call someone on the phone was a lifeline for many of our patients, particularly the elderly limited English-proficient ones.
Then the other key thing that we said is, our community is very capable of learning some of the digital literacy, but it takes a lot of investment. It takes the workforce, like you were talking about, Dr. McLemore. It takes that bicultural and bilingual workforce to work with them. I do not think it is enough for us to say we will bring broadband, we will give you smartphones. It is not, and we showed that in our remote patient monitoring—that it took staffing that we had to set aside to really handhold them through this. But once they got it, they were able to convert. And to that question about how do we transform to this new digital era without the language—we cannot. We really need to advocate that not only is it in language, but it is also in the pictures.
For low literacy communities, we have the staffing to support them. Because as we have seen from the pandemic, the disparities were already existing. It just came out more. But for our community, that invisibility became worse. And it takes many community-based organizations, many community-based researchers, to really document that.
And last, but not least, Dr. Zhang.
Many times, we lumped everything together for AANHPI and we have a good number, but we do not understand the deep-down reasons and the causes to the disparities within the community. That is probably also one reason I really like Dr. Samoa's piece working with the community, identifying the burdens, especially difficult situations within the local areas, regional areas. We will find out the resources to address specific disparities and have the most culturally and linguistically appropriate interventions to address these issues.
I think these are the evidence we needed in order to really change the policy. My previous work with U.S. Preventive Task Force made me realize that only if you have the data and evidence, then you will have the recommendations, then Medicare and Medicaid will pay for it. Without data within all the AANHPI communities we care, nothing will happen. So, congratulations to everybody for the great work here. I think we need more special issues on these topics, so we have enough data to really have community engaged efforts and have precision public health interventions tailored to specific populations.
I think we need to think about other domains and other topics where Health Equity could lift this work up. And I do not think this is just the one and done first special edition.
I think that just happened to be the first, but we probably will have several others. One of the questions that came up that is like a question we had earlier, which is in addition to the overt acts of hate, are microaggressions in both personal and professional situations tracked? And if yes, what are the data telling us, and where and how can agencies—both federal, local, and state—address this?
I am looking at you, Dr. Samoa, maybe as somebody who might have some inkling around this, but maybe you do not. Not to put you on the spot.
I think there should be some type of national database where these types of events are reported. The other issue we are having is that the reporting of racist events is still problematic in that—and Dr. Thu can probably talk to this better than I can—is that there are a lot of communities that are not fully vested in their relationship with law enforcement, and yet they are asked to report vulnerable things to them.
I think a lot more education led by the Department of Justice needs to start to happen so that communities can start to foster that trustworthiness, if you will, so that they begin reporting at that level.
Is there any focus on use or development of pictographs?
We cannot replace that. What I am fearful of is automation of everything now that is digital. So, I think we need to still advocate for investment in the workforce and in the communities—putting them in the communities that we serve.
Footnotes
Acknowledgment
We gratefully acknowledge support for this supplement from the Blue Shield of California Foundation.
Author Disclosure Statement
Zhuo (Adam) Chen has received support for this study from the Chinese Medical Board. Grace X. Ma has received support for this study from an NIH grant. Krystal Ka'ai is an employee in the executive brand of the federal government and has no competing interests. Monica McLemore, Raynald Samoa and Xinzhi Zhang have no competing interests. Thu Quach has received support for this study from the Human Resources and Services Administration, Direct Relief Center for Care Innovations and Asian Health Services.
