Disaggregating AAPI Health Data is Key to Combating Health Disparities
Asian Americans and Pacific Islanders (AAPI) are the fastest growing racial/ethnic group, encompassing 25% of all foreign-born people in the U.S. and projected to reach nearly 34 million by 2050. But Asian health research is drastically underfunded, representing only 0.3% of all NIH grants awarded. Recent research, including studies led by Stanford faculty, has found that people with roots in India, China, Japan, Korea, Vietnam, the Philippines, the Pacific Islands among other countries have widely divergent risk profiles and often very different responses to common medications. Throughout the COVID 19 pandemic, lack of disaggregated AAPI data made it impossible to identify which AAPI groups had the highest infection and lowest vaccination rates.
At a briefing, Sept. 16, held jointly by Stanford Medicine, Center for Asian Health Research and Education, and Ethnic Media Services, speakers – Dr Bryant Lin, Co-founder of Stanford Center for Asian Health Research and Education (CARE), primary care physician, researcher, educator; Dr Van Ta Park, Professor at UCSF, School of Nursing, working on an NIH/NIA R24 grant on how to address the gap and reduce disparities in research participation among AAPI; Dr Winston Wong, Chair of National Council of Asian Pacific Islander Physicians, member of COVID-19 Health Equity Task Force for the U.S. Department of HHS Office of Minority Health; and Thu Quach, PhD, President of Asian Health Services – shared the latest data on AAPI health indicators, delved into the underlying contributors to such differences and explored why a one-size-fits-all approach to health care falls short and may even lead to inadvertent harm.
Dr Bryant Lin
“We are Asians, we are treated as one giant group, but we are also not a monolith. We founded Stanford CARE, The Center for Asian Health Research and Education in 2018.
We don’t look the same, we don’t act the same, we’re not from the same countries, but we gather together with a common goal of improved knowledge, empower education, and to impact clinical care,” said Dr Lin., who started CARE with his colleague Dr Latha Palaniappan.
“I had this patient, and he was kind enough to agree to share his case today, with all of you and with anyone, and he really inspired me to reach out to Dr Palaniappan to start CARE.
“He was a 74-year-old man, had gout, a common disease where you get inflammation of your joint, most commonly in your toe, very painful due to crystals in the joint and he had a lot of these episodes.
“I gave him a common medication that we give to prevent these flares called Allopurinol.
“Unfortunately for him, he developed a severe life-threatening skin reaction called Dress, and had to be hospitalized.
“If we look at the FDA label for Allopurinol, nothing is mentioned about Asian groups in particular, people of Han Chinese descent having a much higher risk of the skin reaction, and I was not aware of this as a Chinese American primary care doctor.
“This is known in Asia but not widely known in the United States.
“It’s due to a genetic factor called HLA-B*58:01, and it doesn’t just affect Asians, but also African Americans, who also have an elevated risk for this skin reaction from Allopurinol, again not widely known.
“This is the importance of understanding what the risks are for Asians, but it’s not all Asians, it’s specifically even though the chart here says Asians, it’s specifically people of Chinese descent, and this is something we can test for or give an alternative medicine for, so this skin reaction is potentially preventable.
“The benefit of understanding risks for different ethnic groups is very important because it does also impact African Americans,” said Dr Lin.
“The next story is related to COVID. We saw this Pew study that came out in 2020, important to do, they only included 278 Asian Americans, and they did not disaggregate them, and we saw this, that compared to whites who were surveyed, 26 percent of Asians feared that somebody may threaten or physically attack them.
“In this case, I’m again interpreting their data as a 2.9 times risk reported compared to whites. “We did our study, we surveyed far more Asians, almost 2,000 in total, and there was a huge difference between Asian subgroups.
“If you look at the Pew study, you may come to the assumption that without disaggregation, when you’re aggregating Asians, you’re underestimating the risk of concern for physical assault, whereas when you disaggregate Asians, the results are very different.
“Vietnamese reported almost a 5.4 times higher risk, meaning they reported this in much higher numbers than the non-Hispanic whites in the survey, and when you disaggregate South Asians, there’s no increase in reports and odds reported by South Asians in our survey.
“There’s a very big difference in a very important finding from our study, that when you disaggregate, it really reveals the much higher concern from different Asian subgroups, and all not all Asian subgroups reported the same concern for physical assault due to COVID 19.
“This leads us to an example about mortality pre-COVID. COVID impacted mortality of all groups but when you disaggregate Asians, the number one leading cause of death among men and women are very different across Asian subgroups.
“With Asian Indians, heart disease is the number one cause of death. Among Chinese, Korean, and Vietnamese, cancer is the leading cause of death, this is from a study published in 2015 by my colleague, Dr Latha Palaniappan.
“It’s important to disaggregate. If you aggregate all Asians, it looks like cancer is, the leading cause of death, but there is very important heterogeneity here and two examples, Asian Indians and Korean Americans, having very different leading causes of death,” said Dr Lin.
“As South Asians have an elevated risk of death due to cardiovascular disease, the number one way we decide as a physician, is if you go to your cardiologist, if your cholesterol is high, how do you decide whether to start a statin, a drug like Lipitor or not.
This is the calculator – You don’t need to look at all of this – your age, your gender, blood pressure, but race is a factor in this model, and the races that we put into the model are white, African American, and others.
“I’m in the ‘other’ bucket so other is a huge bucket. We must do better than this. There’s a lot of nuance to this bucket, and again, it doesn’t just affect Asians, it affects other ethnic groups as well.
“These estimates may underestimate for certain groups, and overestimate the risk for others, not just Asians, but also American Indians, some Hispanics, as well as other Hispanic groups.
“Disaggregation is important to get a finer idea of risk for heart disease for across all subgroups of Asians,” said Dr Lin.
Why is that calculator or that statistical model so flawed?
“There’s a study called the Framingham Heart Study. It the biggest, most respected heart study in the world. It’s been going on since 1948. It was not a diverse community and the ancestry of in people in the cohorts, the original, the offspring third generation, and offspring spouses, was 100 percent European American.
“Our decisions are based upon this study, to treat people who are not European American, so it’s really important to understand this, we need better data around Asian Americans, and we also need to disaggregate,” said Dr Lin.
Dr Winston Wong, a family practitioner, emphasized that “disaggregation of data is certainly critical beyond Asian Americans, in particular with regards to Pacific Islanders and also native Hawaiians.
“Ethnic media plays a very key role in terms of not just identifying where we know data, but where the gaps are in data. The question of disaggregation of data relative to Asian Americans is continuing a narrative to say – Asian Americans do not count in the aggregate and do not count in the disaggregate, and until we have the kind of will, political support, and advocacy, it will not change. The stories with regards to our different subgroups will not be surfaced.
“When the COVID pandemic first occurred, we got data in terms of who was getting infected; who was getting hospitalized; and who was dying; and ostensibly, every state would report on this these three critical areas with regards to the COVID pandemic. Our organization went diligently to the CDC to look at that data in aggregate.
“In the first six months there were at least 25 states that did not identify Asian Americans as a separate group, and certainly most of them did not identify Pacific Islanders as a separate group, relative to incidents, hospitalization, and death.
“There were about 20 states that reported Asian American data for COVID 19 initially, but there were very few states, three to five, Washington state, a little bit in California, with regards to looking at sub-data for example, Chinese Americans, Vietnamese Americans, Micronesians.
“Asian Pacific Islander community across the country were seeing a lot of Asian Americans that are being infected with COVID 19,” but national and even state level data models were not reflecting that accurately.
“This kind of data is only identified at this point by the activists, the community providers, the physicians, and nurses who care for that community, because they’re providing the culturally competent and linguistically accessible care to these populations, but it’s not necessarily getting captured at the statewide level, that gets rolled up to make national headlines.
“If you read the headlines early on, in COVID 19, it would say Black Americans and Latinx populations were among the highest impacted communities, which was true, but if I also put the headline of and Micronesians in Arkansas were being seen among the highest death rates, higher than even Black Americans in Arkansas, it wouldn’t have gotten notice, so this is why the importance of underscoring disaggregation as critical to the health of our community.
“We agitated at our organization to have the CDC put up against their own national standards, to require the states to at least report on Asian Americans, Pacific Islanders, and native Hawaiians, as separate categories at least, and over the course of this two-year pandemic, the states are finally reporting across the three categories,” said Dr Wong.
Dr Van Ta Park, Professor at UCSF, School of Nursing, spoke of the challenges faced due to language barriers when considering research studies that included Asian American, Native Hawaiians, and Pacific Islanders.
“When we look at the Alzheimer’s Disease research centers in our country, funded by the NIH, only 2.7 were identified as AANHPI participants, mostly English-speaking. There are various challenges to why there is this under representation, in addition to the severe funding situation.
“We have cultural differences, linguistic limitations, we need bilingual and bicultural staff, we also need funding to provide the education and outreach about what is research, why it is important to participate in research, and how one may get involved in participating in research.”
“A couple of dozen academic and community partners wrote an application to the NIH, in particular the National Institute on Aging, to build a care registry, where we will address the gap and reduce disparities in research participation by the development of culturally appropriate, innovative recruitment strategies with our community partners via the care research recruitment registry. Our goal is to recruit 10,000 adults and we launched during the COVID pandemic.
Who can enroll?
“If you self-identify as AANHPI and you’re 18 years or older.
As of now, through our first grant, we have English, Chinese, Mandarin, and Cantonese, Hindi, Korean, Vietnamese, Samoan, online enrollment, and by phone.
“We have Cantonese, Korean, Mandarin, and Vietnamese, and a multilingual website.
“We ask questions about who you are; socio-demographic information, broken down by different kind different cultural groups, in languages we have; we ask about health conditions; health behaviors; caregiving experiences.
“We ask all these questions so we can potentially better match you to research potential research studies, so you can participate in those respective studies by choice.
“So far, we have recruited almost 9,300 adults, which is outstanding given that everyone had to pivot on how to do outreach, to pop communities via Zoom and phone.
“Most people were born outside the U.S. Many live in California because this began as a California registry, but we do have plans to apply for funding for CARE 2.0 this year. 81 percent of recruits reported no previous research participation experience,” said Dr Park.
Thu Quach, PhD, President of Asian Health Services, a Vietnamese American, who was born in Vietnam and raised in the Bay Area, spoke about Asian Health Services, which is a federally qualified health center with dual pillars of service and advocacy.
“For nearly five decades, we have been providing medical, dental, and behavioral health care to 50,000 patients in English and 14 languages with some of our largest language groups being Cantonese, Mandarin, Vietnamese, Korean, Kamai, Tagalog, Mongolian, Burmese, Karen, Kareni, Myan and Lao.
“It’s important for us to acknowledge the diversity of these populations we have and continue to advocate to ensure that our community asserts their right to health care including receiving culturally and linguistically competent care.
“When COVID hit, the fault lines of disparities were already there. Our Asian American population were simultaneously blamed for the virus and ignored when it came to services because of the racist narratives that were predominantly put out by the former administration, that blamed Asians for causing the virus.
“In the first month of the pandemic, there was very little resources, especially when it came to COVID testing. We did a survey and found that only three percent of our community were getting tested, compared to about 10 percent in other communities in our county.
“After months of advocacy for in-language services, Asian Health Services was funded by Alameda County to provide free accessible COVID testing in July of 2020.
“We had since provided nearly 100,000 COVID testing in multiple API language to our community. Because of a bill that was passed in California called Assembly Bill 1726, passed by former Assemblymember Rob Banta, who is now our Attorney General, it requires that the Department of Public Health collect disaggregated AAPI data.
“We were able to collect this disaggregated data for anyone who came to our sites to receive COVID testing, and when we analyzed that data we found that as an aggregate group Asian Americans had lower COVID positivity rates, yet when we were able to disaggregate it we found that the Vietnamese Americans, that were being tested our site had twice the rate of everyone else.
“This was a trend that was continuing for months. Informed by this disaggregated data we quickly focus on expanding our testing, outreach, and education, as well as other services to the Vietnamese Americans in our community. We even started opening up a new testing site at a park within Little Saigon of Oakland, and then what we saw was that many of the residents in the area were low income, limited English proficient elderly Vietnamese who couldn’t access services.
“They were living in crowded housing and because of the pandemic they were coming out to very crowded food distribution sites just to make ends meet, putting them at greater risk for covid. We partnered with local community groups to provide testing and soon as soon as the vaccines were available we were able to roll that out immediately with that group so with the limited resources that we had we were able to have targeted interventions with the most impacted group at that time, and this is why disaggregated data matters, not just in identifying the problem, but in providing timely responses to address such problems.
“As we enter into the third year of the pandemic, facing multiple issues including anti-Asian hate, social isolation, other viruses that we’re seeing, and an unstable economy with alarming inflation, we know that our communities may continue to suffer without accurate data.
“They suffer in silence, whether it’s in mental health crisis, the trauma of targeted violence, or their pent-up health needs, because they aren’t able to access telehealth care due to the digital divide, so as we look into the future, we must continue to advocate for disaggregated data because there are lives at stake here, and it’s imperative for public health practice as well as for health care,” said Dr Quach.
