The Feasibility of Using Electronic Health Data for Research on Small Populations. Population #1: Asian-American Subpopulations

“Asians” are one of the five race categories that must be used in the federal government’s surveys and administrative forms under rules of the Office of Management and Budget, but the Asian-American population is quite internally diverse. The 15.5 million Asian Americans who compose about 4.4 percent of the American population include more than 50 different Asian ethnicities and 100 languages. Asian Americans are concentrated in urban areas, particularly in California, New York, and Texas. Which Asian-American subpopulations are found in particular areas varies. Urban areas in California like Los Angeles and San Francisco, as well as eastern areas like New York City have larger Chinese populations than any other Asian subpopulation, while urban areas in Texas have higher concentrations of Asian Indians and Vietnamese.²⁶ Other local concentrations of Asian subpopulations can increasingly be found throughout the country.²⁷ Between 2000 and 2010, there was a 46 percent increase in the Asian-American population, making them the fastest growing racial group.²⁸

It has been well documented that racial and ethnic minorities receive lower quality health care than non-minorities even after accounting for access-related factors,²⁹ but little of the research on racial/ethnic disparities has focused on Asian Americans. Their health care needs remain poorly understood due to inconsistent definitions used in data collection, lack of disaggregated data about ethnic subgroups, and the uneven geographic distribution of the Asian-American population.³⁰

The commonplace view of Asian Americans as self-sufficient, educated, and upwardly mobile fails to recognize the health needs of Asians overall, as well as their diversity in terms of ethnic background, country of origin, length of time in the United States, and other factors that may affect health and health care.³¹

Figure I.1, which comes from the Palo Alto Medical Foundation Research Institute’s Pan Asian Cohort Study (National Institutes of Health, National Institute of Diabetes and Digestive Kidney Diseases grant 5R01DK81371), which primarily utilizes electronic health record (EHR) data, shows diabetes prevalence among men in the San Francisco Bay area and provides a vivid example of the differences in health problems among sub-groups of the Asian-American population.³² The prevalence rate among Filipino men is more than three times that of Japanese men. It is apparent from these and other data, that health needs vary greatly within what is often treated in research as a single racial population.³³

Figure I.1. Pan Asian Cohort Study—Preliminary Findings for Diabetes Prevalence

Source: Pan Asian Cohort Study. “Preliminary Findings for Diabetes Prevalence.” Palo Alto Medical Foundation. Accessed March 1, 2013. http://www.pamf.org/pacs/men.jpg.

There is also evidence of health care–related differences within the Asian-American population. Asian immigrants to the United States are less likely than U.S.-born Asians to have health insurance and use health care services.³⁴ Linguistic isolation (living in a household in which no one above age 14 speaks English) may contribute to this. About one-quarter of Asian Americans live in linguistically isolated households, with rates ranging from 10 percent among Filipinos to 45 percent of the Vietnamese.³⁵ Not surprisingly, linguistically isolated households tend to be of low socioeconomic status and have poorer access to care and more depravation of various kinds than do households in which English is spoken. New immigrants from all countries tend to locate near earlier immigrants. This pattern may facilitate access to various kinds of culturally specific goods and services but may produce isolation from the larger society as well as shared exposure to any environmental risk factors that are proximate to their locale.³⁶

The language barriers and cultural differences associated with immigrant status create various complexities, including communications difficulties with health care providers, advice that is inconsistent with cultural beliefs and practices, and dissatisfaction with or distrust of medical advice.³⁷ Imperfect language translation and nuance can create confusion. Language and cultural isolation of immigrant or non-English speaking groups may present barriers to care-seeking and treatment.³⁸ Behavioral health issues—stress, smoking, domestic violence, alcohol abuse—may also be associated with these factors.

There is need for better information about subpopulations of Asian Americans, as can be can be illustrated by considering the examples of Vietnamese and Filipinos in the United States.

• Vietnamese Americans

  • The majority of the 1.7 million ethnic Vietnamese Americans trace their origins to the mass exodus that followed the Vietnam War. Concentrations of Vietnamese Americans can be found in California, Texans, Washington, Florida, and Virginia.³⁹ Vietnamese Americans have a lower median income than do Asian Americans overall.⁴⁰ Moreover, the circumstances under which they entered this country left much of this population with a sense of cultural, economic, political, psychological, and social upheaval that continues to affect their health today.⁴¹

    Information about the health problems of the Vietnamese-American population is limited. There is evidence that Vietnamese women have higher rates of ulcers, stroke and diabetes compared to women in other Asian subpopulations.⁴² Vietnamese-American women also have cervical cancer rates that are three times that of Asian-American and Pacific Islander women overall.⁴³ Notably, low levels of knowledge of the Pap test have been found among Vietnamese-American women⁴⁴ who also have low cervical cancer screening rates.⁴⁵ Health beliefs and attitudes towards gynecological exams, as well as concerns over cost contribute to low screening rates among Vietnamese Americans.^{46, 47, 48}

    The 2007 California Health Interview Survey (CHIS), which oversampled Asian subpopulations and was administered in five languages (including Mandarin, Cantonese, and Vietnamese), provides evidence that language barriers and health illiteracy are particularly important problems in this population. Vietnamese were more likely than Chinese to have limited English proficiency (38.5 percent vs. 27.4 percent), and limited English proficiency was strongly related both to low health literacy and poor self-reported health status.⁴⁹ Almost two-thirds (64 percent) of the Vietnamese who had limited English proficiency reported themselves to be in poor health, by far the highest level among the five racial/ethnic groups for which separate data could be broken out in the survey. By comparison, 39 percent of Chinese with limited English proficiency reported “poor” health, while the rate among whites, of whom more than 99 percent were proficient in English, was 13 percent.

• Filipino Americans

  • Filipino are the third-largest Asian subpopulation in the United States (after Americans of Chinese and Indian backgrounds), with 2.6 million people and concentrations in California, Hawaii, Illinois and New York.^{50, 51} Reflecting a history of Spanish and American rule, Filipinos have a unique blend of Eastern and Western culture, including Hispanic surnames and English and Spanish as official languages. However, more than 120 languages are spoken among ethnic subgroups of the Philippines, and a substantial minority of Filipino-American’s speaks Tagalog, which is the 4th most frequently spoken language at home in the United States (2007), although most Tagalog speakers also speak English.⁵² Filipinos have migrated to the United States throughout the 20th century and earlier, many for economic opportunities in an English-speaking environment. Thus, the transition for Filipino immigrants may in general have been less severe than for Vietnamese immigrants.

    Despite largely successful assimilation in the United States and the highest high school graduation rate of any Asian sub-group, Filipino Americans face a number of health issues. They have higher rates of diabetes⁵³ and coronary heart disease ⁵⁴ than whites. Filipino women also have greater risk of stroke.⁵⁵ In addition, Filipino women have the highest rates of cancer, epilepsy, and rank highest in drug use and smoking among Asian-American women subpopulations. However, they also have significantly better self-rated mental health.⁵⁶ Use of “traditional” medicine is particularly prevalent among first-generation Filipino Americans, particularly those who obtain care during visits to their home country. Examples of traditional medicine include touch/therapy massage, spiritual healing, and use of natural remedies such as herbs, oils and spices.⁵⁷

• Coverage of Asian-American subpopulations in federal data collection

  • The best information about Asian-American subpopulations comes from the U.S. Census, but little information is collected there about health and health care. The Current Population Survey and American Community Survey (ACS) do collect information on health insurance that can be broken down by subpopulation. The ACS also collects information on disability. The Census Bureau has recently released criteria around an option for federal agencies to use the ACS as a sampling frame for follow-on surveys for rare populations, potentially allowing for further data collection from Asian subpopulations or other small populations as identified through the ACS.⁵⁸ However, these follow-on surveys are expensive, and, as is further discussed below, there remain challenges in identifying some Asian subpopulations through the census.

    Limited health information about Asian-American subpopulations is available in some federal surveys, including the National Health Interview Survey (NHIS), the National Health and Nutrition Examination Survey (NHANES), the MEPS, and the Early Childhood Longitudinal Survey (see Table I.3). However, within a racial group (Asians) that comprises only 4.4 percent of the populations, sample sizes of subpopulations are often too small to permit meaningful data analysis, particularly when co-variates such as age, sex, or region are factored in. Also, a sampling bias arises in surveys that collect data only in English and Spanish, as is the case with most national surveys.⁵⁹ For the first time, the most recent NHANES survey oversampled Asians (including Koreans) in larger cities and worked with the Asian community and advocacy groups for outreach.⁶⁰ However, a lack of interviewers able to conduct the survey in the appropriate languages and other factors like cultural attitudes and beliefs about participating in surveys may have limited participation from Asian subpopulations, thus lowering the response rate for Asian subpopulations.⁶¹

    Data about Asian-American subpopulation groups are even more limited in other federal surveys. None were collected previously, for example, in the CDC’s Behavioral Risk Factor Surveillance System (BRFSS), the National Household Education Survey, the Survey of Income and Program Participation, National Survey of Family Growth, National Immunization Survey, or Medicare Current Beneficiary Survey, although many federal surveys are being updated to include this information going forward. There is also variation by state in what they collect in their National Vital Statistics, which identify Chinese, Japanese, Hawaiian, and Filipino in 50 states, but identifies other Asian subpopulations such as Vietnamese and Korean only in nine states (in which two-thirds of the Vietnamese and Korean subpopulations reside).⁶²
    Some states may collect data on Vietnamese and Koreans, but the sample sizes are too small to produce valid or reliable estimates, so they do not report figures for them at all.

    Some other surveys have collected data about at least some Asian-American subgroups. The federally funded National Latino and Asian American Study collected data in 2002–03 from a nationally representative sample about the mental health needs of two rapidly growing populations. The Asian-American sample was stratified into Chinese, Vietnamese, Filipino, and Other Asians, and data were collected in Chinese, Vietnamese, and Tagalog as well as English and Spanish.^{63, 64} The California Health Interview Survey (CHIS), modeled after the National Health Interview Survey (NHIS), sought to include hard-to-reach populations and collected data in several Asian languages.⁶⁵ Some other state or city-based surveys, such as New York City Community Health Survey, have included information on Asian-American subpopulations.

    In addition to survey-based studies, studies are beginning to appear that have used EHR data to study Asian subpopulations.^{66, 67} This topic is the focus of the second part of this report.

• Limitations of available data sources

  • Recognizing the health needs of and health-related differences among, Asian-American subpopulations, various researchers, policy makers, and advocates of Asian Americans have called for more consistent and standardized collection of data on Asian subpopulations. The challenges faced getting adequate data to study the health and health care of Asian-American subpopulations include language barriers, small numbers, and differences from project to project in how groupings are defined and combined. The first two of these problems interact with each other. Although costly, it is possible to collect data in multiple languages, and some surveys have done so. But the problem of small numbers adds complications. The Asian-American population is itself small, and its subpopulations and language groups are of course even smaller.

    Under the Paperwork Reduction Act, the Office of Management and Budget uses race and ethnicity standards in its review of federal agency requests to collect data through surveys and forms. For the most part, surveys conform to the standard categories. Additional granularity is encouraged when feasible, but always must permit aggregation to the appropriate categories prescribed in the standard. Because administrative data are not always reported by individuals themselves, rather collected by providers or other parties, the level of consistency may not match surveys. The aim however is to strive to meet the standard when possible. Determinations about level of granularity are made in the context of an expectation about whether a particular data collection activity is likely to generate a sufficient response.

    Standards continue to evolve. In 1997, OMB revised federal data collection standards to separate Asians and Native Hawaiians. More recently the ACA directed HHS to establish standards for the collection of race, ethnicity, sex, primary language, and disability status. An effort led by the HHS Data Council produced a set of guidelines for surveys that expands the standards.⁶⁸ As new and existing surveys are presented for review and approval, these standards are now being implemented. A similar effort is under way to recommend guidelines for administrative data.

    In addition to efforts spurred by the ACA, other federal, state, and private initiatives could generate improved data. Federal Meaningful Use requirements do specify collection of race and ethnicity categories required in specific geographic areas based on the population make-up.⁶⁹ Thus, medical records-based information about Asian subpopulations is likely to be collected only in locales where concentrations of those populations exist.

    By the mid-2000s nearly 80 percent of hospitals were collecting race/ethnicity data from their patients, with teaching, urban, and hospitals in states with mandates to collect racial/ethnic data more likely to collect and report the data (such as state requirements that patient demographic information be included in hospital discharge data).⁷⁰ There is less information about the collection of such information by other providers, and there has been doubt and confusion about how best to collect it. The Institute of Medicine has advised that such data should be collected from patients themselves, rather than by clerical observation, and most hospitals reported doing so. Most hospitals were using the OMB categories but up to 10 percent were using finer categories based in part on local circumstances. 78 percent of hospitals that collected race/ethnicity data used the category “Asian”, 25 percent used “Pacific Islander” and fewer collected more granular Asian categories.⁷¹ A 2009 IOM committee report highlighted several efforts to improve hospital collection of race and ethnicity data, including a Robert Wood Johnson Foundation initiative that required participating hospitals to systematically collect such data and use it to stratify quality measures. The IOM report notes that other hospitals have successfully collected race and ethnicity data for the purpose of linking them to quality measures. In 2007, Massachusetts required all hospitals in the state to collect race and ethnicity data on patients with an inpatient stay, an observation unit stay, or an emergency department visit.⁷²

    There have been many efforts to improve Medicare race and ethnicity data collection. CMS has supported various efforts, such as annual updates from Social Security data, quarterly updates on American Indians and Alaska Natives from the Indian Health Service, and requesting self-reporting of race through mailings.⁷³ Researchers have used Census surname lists that allow them to more correctly impute race/ethnicity codes.⁷⁴

    The categories used to characterize racial/ethnic groups present additional problems. Groups like the Association of Asian Pacific Community Health Organizations have worked to standardize definitions for collecting data on Asians across organizations to better understand their health service use.⁷⁵ The problem of categories has distinctive features among Asian-American subpopulations. The U.S. Census reports data for six Asian-American subcategories as well as “Other Asian” with a write-in box (see Figure I.2), but the use of so many categories may not be practical for many data collection purposes. In addition, Asians from the same subpopulation may describe themselves differently when given the opportunity to fill in the open ended box for “Other Asian.” The federal Office of Management and Budget has adopted standard racial/ethnic categories for federal data collection, but they have not been uniformly adopted by the many different entities that collect survey or administrative data.⁷⁶ Moreover OMB’s five racial and one ethnic (Hispanic/Latino or not) category are considered by some researchers and advocacy organizations to be insufficient for understanding disparities and targeting quality improvement (QI) efforts. In considering the collection of race, ethnicity, and language data, an 2009 Institute of Medicine committee recommended adding questions about (a) English language proficiency, (b) preferred spoken language for health care, and (c) “granular ethnicity,” defined as “a person’s ethnic origin or descent, ‘roots’ or heritage, or place of birth of the person or the person’s parents or ancestors.”⁷⁷

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    Figure I.2. Reproduction of the Question on Race from the 2010 Census

    

    Source: U.S. Census Bureau, 2010 Census questionnaire.

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    Changes in the categories used in data collection create difficulties in documenting trends. In 1997, the OMB revised federal data collection standards to make separate categories of (a) Asians and (b) Native Hawaiian and Other Pacific Islanders (NHPI). However, race and ethnicity data collection is not mandatory across government programs and often uses inconsistent categories where it has been implemented. A study in the early 2000s compared Medicare enrollee data with self-reported race and ethnicity in Medicare’s Consumer Assessment of Health Plans (CAHPs) survey. The enrollment data matched only 55 percent of the people who self-reported as Asian, in part because many Asians were coded as “other” in the enrollment data.⁷⁸ Other studies have also found that Asians are commonly misclassified or classified as “unknown” race.⁷⁹ Some researchers have used preferred language selected for Medicare mailings and surname data from the Census Bureau to impute missing data for Asians,⁸⁰ although common Hispanic surnames for Filipinos make this problematic, as do some last names (e.g. Lee and Park among Koreans). Birthplace or parent’s country of birth has also been used as a proxy for ethnicity, as in the national SEER cancer registry, but nativity and ethnic identification are not always synonymous.

    In sum, various cultural, socioeconomic, and historical factors mean that there are variations in many aspects of the health of people from the various Asian subpopulations, but the research on their health needs and the care that they receive has been limited. Survey research has been limited by the small size of the subpopulations and by language barriers, as well as by other general limitations (e.g., self-reported, clinical detailed needed for certain studies). Research from administrative and medical records data has faced practical issues in the collection of recommended data on race/ethnicity and related issues (e.g., country of origin or month in country, language, etc.). The geographic concentration of some subpopulations may facilitate survey data collection at the state or local level and enhance the feasibility of medical record based research from health plans and providers that serve that population, but only if data collection goes beyond the standard racial/ethnic categories and data are collected as recommended (e.g., self-reported versus what clerks or clinicians assume). Generalization from certain geographic locations is hazardous, since the Asian communities on the West Coast, East Coast, and elsewhere differ in terms of their immigration histories and various social, economic, political, and even health-related characteristics.⁸¹

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