Disaggregating Racial Data: How Studying Ethnic Subgroups Can Improve Research

Kao Lee Yang
Kao Lee Yang, MPA/PhD candidate

A graduate student from the University of Wisconsin–Madison is pushing for the disaggregation of data in research to better understand how individuals from different ethnic subgroups are represented as research participants and as researchers. Kao Lee Yang began writing and discussing the topic after the Howard Hughes Medical Institute’s Gilliam Fellowship for Advanced Study rejected her application for not meeting their racial and ethnic underrepresentation criteria, despite often being the only Hmong American scientist in many research spaces. Yang joins the podcast to discuss her opinion piece for STAT News, the problems with using aggregated data, and how the push to study individual ethnic groups could improve Alzheimer’s disease research.

Guest: Kao Lee Yang, MPA/PhD candidate in the Neuroscience and Public Policy Program and Bendlin Laboratory, University of Wisconsin–Madison

Episode Topics

6:12 Why is combining all Asian people into one category detrimental? What is improved when this population is broken down by specific heritages and ethnicities?

8:40 How did people respond to your initial article in STAT News?

9:30 Why do you think it’s important to look at the individual ethnic groups within research?

11:17 How does the problem of aggregating data on Asian Americans impact the field of Alzheimer’s disease research?

Show Notes

Read Yang’s opinion piece, “I’m almost always the only Hmong American scientist in the room. Yet I was told I come from a group overrepresented in STEM,” on STAT News’ website.

Read Yang’s correspondence, “Disaggregate data on Asian Americans — for science and scientists,” on Nature’s website.

To learn about more Hmong researchers and scientists like Kao Lee Yang, follow the Twitter account she recently launched, @HmongInBioSci.

Read about Alzheimer’s disease research in the Bendlin Lab.


Intro: I’m Dr. Nathaniel Chin, and you’re listening to Dementia Matters, a podcast about Alzheimer's disease. Dementia Matters is a production of the Wisconsin Alzheimer's Disease Research Center. Our goal is to educate listeners on the latest news in Alzheimer's disease research and caregiver strategies. Thanks for joining us.

Dr. Nathaniel Chin: Kao Lee Yang is a graduate student in the neuroscience and public policy program at the University of Wisconsin–Madison. She is also a member of Dr. Barbara Bendlin’s lab in the Wisconsin Alzheimer's Disease Research Center. In 2021, the University of Wisconsin–Madison nominated Ms. Yang, a Hmong American researcher, to apply for the Howard Hughes Medical Institute's Gilliam Fellowship for Advanced Study, which seeks to support students whose heritage is underrepresented in science. Following her nomination, the institute rejected her application on the grounds that she did not fit their racial and ethnic underrepresentation criteria as an Asian American. In response, Yang published an opinion piece in the online journal STAT describing her experience as one of the only Hmong American researchers in many scientific spaces. Since then, Yang has pushed for the disaggregation of data on Asian Americans to accurately see the ways Alzheimer's disease affects different communities within the Asian diaspora and increase representation within research. In January 2022, she created the Twitter account @HmongInBioSci, to amplify the voices of Hmong scientists and researchers. In March, she wrote a correspondence in the journal Nature about the importance of studying ethnic subgroups to collect better research data. Kao Lee, thank you for joining me on Dementia Matters. To begin, what sparked your interest in neuroscience, and what are your goals, at least right now, in this field?

Kao Lee Yang: Thank you, Nate, for having me here. So my paternal grandmother died from dementia, and that led me on the path to learning more about what happens to the body as we age, as well as what kind of diseases we’re susceptible to. I was especially interested in learning more about dementia and in general aging. Since dementia is a disease of the brain and Alzheimer's disease primarily causes dementia, that led me to neuroscience work. Naturally my goal is to continue training as a scientist, but I also want to learn about public affairs and then find a way to bridge science and policy.

Chin: Well it seems like you're in the right PhD program then, the combination of the two. With what we're discussing today, I wanted to provide a little bit of background on the Hmong community and so, thank you for sharing with me some of this information from the Wisconsin Historical Society. Their website has a wonderful space about the Hmong community, and I found the following excerpt from that website which goes as follows, “The Hmong are a Southeast Asian ethnic group. Immigrated to Wisconsin as refugees in the 1970s and 1980s after the Vietnam War in Asia, most Hmong live in isolated mountain villages in Lao Vietnam and Thailand. Then during the Vietnam War, the United States recruited Hmong people to help fight the North Vietnamese, and when the United States withdrew, 150,000 Hmong fled to refugee camps. In Thailand, resettlement organizations helped many immigrate to the United States and so in 2005, Wisconsin had the third-largest Hmong population in the country after Minnesota and California. The largest Hmong communities in Wisconsin grew up in La Crosse, Sheboygan, Green Bay, Wausau, and Milwaukee.” So it's a fascinating history and something that's available to us online at the Wisconsin Historical Society, and knowing that, Kao Lee, are Hmong Americans Asian Americans?

Yang: Absolutely I think by social and policy-based definitions. I'll back up a little bit. Here in the United States, Hmong Americans are grouped as Asian Americans and the umbrella term Asian evolves from the continent of Asia. So our practice is anybody who has roots in the continent of Asia. Here in America, it’s grouped into that umbrella. And so by geographic location, the Hmong Americans are Asians and I think socially because we share similar physical features, for example having black hair. These are things we have in common, but there are also things that are very different between Hmong Americans and say other members of the Asian American umbrella, such as a Korean American. Interpersonally and culturally, a person who is of Hmong descent and of Korean descent would find that their history, though connected, is very different.

Chin: And you've been writing about being a scientist who comes from a Hmong background, and so I'm wondering, do you identify as both Hmong American and Asian American? Or is there one that you tend to gravitate toward?

Yang: Yeah, so I'm definitely both. I think that the beauty of human society is that we take on different identities, and that varies by our contextual settings and by profession. So if I were to walk into a space where I'm the only Asian-appearing person, then I would be immediately perceived as Asian. But if I walked into a space full of all kinds of people from the Asian continent, then I think people would be more curious about which sub-ethnic group I'm a part of. Or if I go to a family gathering, then I'm my parents' daughter. So I think we all carry these multiple identities at the same time and they are informed by our social settings.

Chin: In your article for STAT News, you talk about your experience of being “Lumped with other Asian heritages in this large and perceived homogeneous group.” So why is combining all Asian people into one category detrimental? And then conversely, what is it that's gained or improved when we separate Asian Americans into their distinct heritages and ethnicities?

Yang: So before I talk about how this practice can be detrimental, I do want to recognize that in general, I think broad categories can be useful, especially from a research perspective, in detecting trends in the general population. For example, with these race-based categorizations, we have been able to detect underrepresentation of some of the most important groups in America like Indigenous peoples and Black and African Americans. But these broad categories, because they're socially defined, means that we lose out on some of the other social definitions and these other important societal factors that could also impact people's health outcomes. So with regard to the Asian and the Asian American community specifically, I think there is a prevailing message in STEMM fields that Asian Americans are well represented and so some might even say that Asians as a whole are overrepresented and I think this is one of the detrimental outcomes. This message is harmful for someone like me. So when we lump all people together with Asian roots, it does make the science easier because we'll have better access to categories and try to see trends and changes, but I think when we do that we sort of ignore or brush aside some of the important cultural, historical and social differences subgroups within the Asian umbrella face. So for example, as you mentioned, Hmong people came here to the United States as refugees following the end of the Vietnam War, but there are also Vietnamese and Lao people who came to the United States as refugees. So here in the United States, our unique refugee history is completely unacknowledged when we are perceived as the same as Asian Americans who already exist in America and who have achieved high degrees.

Chin: And for clarification can you explain STEMM to our audience?

Yang: Yes, so STEMM is an acronym that's often used to refer to science, technology, engineering, mathematics, and more recently, medicine fields.

Chin: So how did people respond to your article, this one that you initially wrote to start news in response to your rejection from the fellowship?

Yang: The response was overwhelmingly positive. Many people wrote to me, specifically people of Southeast Asian descent, and this included students, senior scientists and research staff people in the community. I got many requests in the network, which I'm extremely grateful for, and also I think for the most part, people just wanted to be heard and to be seen, and among all the messages I got there was definitely an expression of shared frustration and feeling invisible.

Chin: And you didn't stop there, you also recently wrote a correspondence article for Nature arguing that it is suboptimal for science to aggregate data on all Asian populations, at least in some contexts, as you've just said, and in terms of research studies and healthcare figures. Why do you think it's important to look at the individual ethnic groups?

Yang: It's important because the outcomes, with what little disaggregated data that we have, do show that there are different outcomes. For example, I talked about achievement rates of high degrees. The National Center for Science and Engineering Statistics, which is located within the National Science Foundation, they are the ones who collect the STEMM data and so their data is aggregated when it comes to Asian Americans and their data. It does show that Asians are well represented in the STEMM fields, but there are other groups who have collected disaggregated data and show that the outcomes for academic achievement are not consistent across subethnic groups that are lumped into this Asian umbrella. So I think that's why it's really important. To disaggregate the data, especially when the outcomes are so different.

Chin: Should we be applying these same concepts to African Americans, Hispanic Americans, Native Americans and European Americans?

Yang: Yes, absolutely. I think we should do that as much as we can and in intentional ways. I think that how the data will be disaggregated will depend on the unique characteristics of each city. So for example, in 2020, the American Community Survey showed that Minnesota has the largest concentration of Somali Americans. So I think that in this case, Minnesotan researchers may consider disaggregating data for African Americans to incorporate the presence of Somali Americans.

Chin: In your work in the neuroscience program, you are researching Alzheimer's disease and related dementias. How does the problem of aggregating data on Asian Americans impact the field of Alzheimer's disease? More specifically, what is the prevalence of Alzheimer's disease in Asian Americans, and do we have actual data on specific ethnicities?

Yang: As of today, I am not aware of prevalence data for Asian subgroups. So I think that the aggregated data would suggest that Asians as a whole have the lowest prevalence. So I experienced dementia in my family, because my grandmother passed away from it, and while we were navigating care for her, we faced a lot of the barriers that English-speaking families face. But in addition to that, we also faced other things that are unique. From being Hmong, which is the cultural barrier, to the language barrier. In general, the goal of dementia researchers is to try and understand Alzheimer's disease — the cause of dementia — and then try to find a way to help people move forward. We have to think about different ways to incorporate the people that perhaps we have not included before and that also need help.

Chin: When we think of social determinants of health, which is a really important concept specifically in aging research and in Alzheimer's disease, research disaggregating data will help us open up so that we can look at some of these other social determinants and these other social contextual factors that may impact a group of people. Is that what you would see too in your work?

Yang: I think that it can help us better understand social contextual factors that affect a group of people that appear to be homogenous. For example, the Pew Center showed in a report that I cited in my STAT article, that within the Asian American umbrella, there's the largest growth in income gap. So what this means is that, there are people grouped in this umbrella that are among the poorest poor and the wealthiest wealthy that are Asians, and so if you're thinking about social determinants to me that would imply that there are people who are Asian who are living in poor communities. So you have to disaggregate the data because, it's not their Asian characteristic that is making them poor or wealthy, but it is perhaps something else; maybe there are refugees who are Asians who are living in lower-income neighborhoods that should be thought about differently instead of just being captured as an Asian.

Chin: So what's next for you, Kao Lee, and your push to disaggregate data on Asian Americans in science or on a completely separate topic within neuroscience?

Yang: What's next for me is to think about ways that inclusion can be defined as I'm training. So how can I be a part of efforts to reach out to different communities so that they can be involved in research, and/or just so that they can know about the wealth of information we already have about dementia, Alzheimer's disease, or aging in general. These are important questions that I'll be exploring. I'll also be actively looking for ways that I could be involved in engaging people.

Chin: Thank you, Kao Lee, for your time, and I hope to have you on again on Dementia Matters.

Yang: Thank you, Nate! It was great speaking with you.

Outro: Thanks for listening to Dementia Matters. Be sure to follow us on Apple Podcasts, Spotify, Google Podcasts, or wherever you get your podcasts to be notified about upcoming episodes. You can also listen to our show by asking your smart speaker to play the Dementia Matters podcast. And please rate us on your favorite podcast app — it helps other people find our show and lets us know how we are doing.

Dementia Matters is brought to you by the Wisconsin Alzheimer's Disease Research Center. The Wisconsin Alzheimer's Disease Research Center combines academic, clinical, and research expertise from the University of Wisconsin School of Medicine and Public Health and the Geriatric Research Education and Clinical Center of the William S. Middleton Memorial Veterans Hospital in Madison, Wisconsin. It receives funding from private, university, state, and national sources, including a grant from the National Institutes of Health for Alzheimer's Disease Centers.

This episode of Dementia Matters was produced by Rebecca Wasieleski and edited by Caoilfhinn Rauwerdink. Our musical jingle is "Cases to Rest" by Blue Dot Sessions.

To learn more about the Wisconsin Alzheimer's Disease Research Center and Dementia Matters, check out our website at adrc.wisc.edu. You can also follow our Facebook page at Wisconsin Alzheimer’s Disease Research Center and our Twitter @wisconsinadrc. If you have any questions or comments, email us at dementiamatters@medicine.wisc.edu. Thanks for listening.