Bridging the Gap Series : May 2022

Bridging the Gap: How Data Can Obscure True Needs of Asian Americans and Pacific Islanders

Introduction by Vice Chancellor Steve Goldstein

May is Asian American and Pacific Islander (AAPI) Heritage month. It was established in 1978 to celebrate accomplishments and contributions. But as Sora Park Tanjasiri, MPH, DrPH, articulates in this installment of the Bridging the Gap series, it is also a time to focus on specific challenges and opportunities when it comes to confronting health equity.

Tanjasiri shares the story of her parents who immigrated to the U.S. from Korea, and while they achieved great successes – including the attainment of advanced degrees – they experienced racism on a daily basis, which compromised their professional prospects. She reflects how those same prejudices invade healthcare in America to cause physical harm. 

Tanjasiri, a professor in the Department of Epidemiology and Biostatistics, associate director for cancer health disparities and community engagement in the UCI Chao Family Comprehensive Cancer Center, and Equity Advisor for the UCI Program in Public Health, is determined to sound a much-needed alarm in order to change how we deliver care. She points out that racism is found in our clinics and hospitals because it exists within many of us who believe in our commitment to first do no harm, that is, well-intentioned health care practitioners and researchers. A critical step toward remediation that she highlights is the importance of seeing members of the AAPI community for whom they are – richly diverse individuals. Otherwise, we fail to see them at all. Tanjasiri reports how narratives that obscure unique features of individuals can mean the difference between life and death.

Tanjasiri’s powerful work resonates with the UCI Health Affairs Discover – Teach – Heal mission and could not be more in line with the recent launch of the Institute for Precision Health (IPH), a university-wide endeavor to use data to prevent disease and, should illness strike, treat each person optimally based on their distinct individuality. As she makes clear, internal biases can lead us to delay or miss diagnoses or to offer inappropriate therapies, sometimes with tragic results. The IPH will produce fundamental changes in healthcare to help us meet our professional obligations. In this, we are supported by California legislation that implores researchers and providers to disaggregate Asian American and Pacific Islander and Native Hawaiian data to better understand and care for our patients. But the hard work must also include confronting racism and unconscious bias in ourselves and as we investigate, educate and serve.

Model Invisibility: How Research Masks the Unique Needs of Asian Americans and Pacific Islanders

By: Sora Park Tanjasiri, MPH, DrPH 
Equity Advisor & Professor, Department of Epidemiology & Biostatistics, UCI Program in Public Health
Associate Director for Cancer Health Disparities and Community Engagement, UCI Chao Family Comprehensive Cancer Center

Sora Park Tanjasiri, MPH, DrPH

I am the proud daughter of Korean immigrants who came to this country nearly 58 years ago to start a new life and to chase their American Dream. After my father and mother received advanced degrees in aeronautical engineering and library sciences, respectively, they dedicated their careers to helping build the nation’s space program and to enriching elementary school resources for young students. Despite their more-than-half-a-century of devotion to the betterment of our communities, they endured prejudice and discrimination culminating in job degradations and threats of deportation from governmental anti-Asian sentiment – and that was in the 1980s. Thus, Asian American and Pacific Islander Heritage Month holds a special place of conflict in my heart, because while it celebrates the enduring contributions of Asian Americans and Pacific Islanders (AAPIs) to our cultures, foods, families and societies, it often fails to recognize how these unique narratives can complement other vibrant immigrant stories. Instead, Asian Americans and Pacific Islanders are often pitted against other communities of color, almost with wily intent to cancel culture – and I would dare argue – cancel AAPI health.

Researchers, academia, and the government have historically and repeatedly ignored the needs of our AAPI populations and sub-groups. Take cancer, for example: It is the leading cause of death for Asian Americans but not Pacific Islanders, where the leading cause of death is heart disease. This is just a glimpse of the disease risk and burdens that we should be researching in the AAPI sub-ethnic groups. I believe there are two factors that contribute to the continued invisibility of needs. First, there is the prevailing minority myths that perpetuate Asians as being healthier (wealthier, smarter, etc.) when compared to other racial/ethnic groups. One of my “sheros,” Ms. Susan Shinagawa, was diagnosed with breast cancer in her 30s, only after tireless advocacy with numerous physicians who did not believe young Asians were at risk. We need to ask ourselves what these model minority myths are doing to the health of minority populations. Second, researchers continue to aggregate AAPIs together in one group and then compare that health data with other races and ethnicities, thus making invisible the significant inter- and intra-racial heterogeneity among the sub-groups. Case in point, Japanese American and Native Hawaiian women are seeing rapidly increasing breast cancer rates.

Orange County’s AAPI population is the third-largest race/ethnic group in the country with almost 700,000 adults and children, which represents a microcosm of our country’s strengths and struggles. O.C. is home to the largest population of Vietnamese in the country making up over 183,000 of that total, nearly 100,000 each of Koreans, Filipinos, and Chinese, and over 5,000 each of Native Hawaiians and Samoans. The majority of all these sub-ethnic groups are immigrants or refugees to the continental U.S., and other than Native Hawaiians (for whom their language was banned from being taught by the U.S. for 80 years) the majority speak an AA or PI language. And each of these sub-ethnic groups have unique health needs, making the one-size-fits-all public health approaches we’ve relied on throughout history largely ineffective.

If national and regional organizations continue to aggregate Asian American with Pacific Islander demographics and health statistics, such as in reports of cancer incidence and mortality, researchers, clinicians, and policymakers will continue to underestimate risk and oversimplify needs. But we know differences exist, such as that East Asians (i.e., those from China, Korea and Japan) more-rapidly metabolize N-acetyltransferase 2 (NAT2) leading to potentially higher toxicity of many cancer therapies. Nearly 20 years ago, Dr. Burchard et al. (2003) stated that “ignoring racial and ethnic differences in medicine and biomedical research will not make them disappear. Rather than ignoring these differences, scientists should continue to use them as starting points for further research.” This argument extends beyond patient concerns to investments in diversifying our health research workforce, for which the National Institutes of Health (NIH) unilaterally omits Asian Americans from qualifying as underrepresented. NIH must recognize the egregious exclusion of Asian sub-ethnic researchers, such as Cambodians, Filipinos, Hmong, Laotians, and Vietnamese, from key funding opportunities that advance our nation’s pressing diversity and inclusion goals.

So, while we celebrate AAPIs through food and festivities, let’s not forget the false narrative that we in academe perpetuate by acknowledging a monolithic AAPI population. Following California’s AB 1726 (the AHEAD Act) that was signed into law in 2016 – which had strong support from the University of California system – we must go further in strengthening strategies of collection and reporting of disaggregated AAPI sub-ethnic group demographic and health data.

For this year’s Asian American and Pacific Islander Heritage Month and the millions of immigrants in the U.S., such as my parents, who helped build this country, I ask that we do better. We must eliminate data aggregation, increase visibility of unique AAPI sub-ethnic communities and the organizations that serve them, and celebrate the scientific complexities that allow everyone the equitable opportunity for health and wellbeing in this country.

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