Incomplete data on Asian Americans hurts health outcomes
Up until 1980, Asian Americans were counted sporadically and only given a few identification categories on the U.S. Census form. Today, data collected by state agencies such as the California Department of Public Health still do not adequately disaggregate Asian Americans into their numerous distinct racial and ethnic categories.
This failure to disaggregate matters. A Pew Research survey last year found that “Asian Americans are less likely than Americans overall to live in poverty (10% vs 13%), but when broken out into subgroups, most of the Asian origin groups analyzed (12 of 19) had poverty rates that were as high as or higher than the U.S. average.”
During the pandemic, California created the Healthy Places Index to monitor vaccine uptake in the most disadvantaged neighborhoods and allocate resources such as additional vaccines. Unfortunately, the Healthy Places Index and other area-based social indices overlook many smaller groups and non-geographically located groups. Native Hawaiian and Pacific Islander groups expressed being left out of such tools.
Our community partner, Empowering Pacific Islander Communities, said it well when its executive director, Tavae Samuelu, said, “I want policymakers and researchers to understand that data, for all its pursuits of objectivity, is not neutral. Because of that, there needs to be an active practice that prioritizes justice and equity, making data a tool for the survival of communities of color and not a weapon for erasure.”
Additionally, a recent report in Health Affairs, titled “The Mutually Reinforcing Cycle Of Poor Data Quality And Racialized Stereotypes That Shapes Asian American Health,” found “flawed data are being used to drive funding decisions, policymaking, and resource allocation, leaving Asian American communities underresourced and underfunded.”
With all these inadequacies and questions about how we collect data, how are we expected to use such data to improve people's health outcomes? Knowing an individual's profile, paired with information about their housing status, their job status, their access to healthy foods and more is the first step toward changing people's lives for the better.
The Cambodian Family Community Center routinely works with an older, Khmer-speaking couple who are both 72 years old and have chronic diseases for which they need to see their family doctor and specialist every two weeks. Seeing their specialist is difficult because Khmer translation is not provided, making it challenging for the couple to understand their health issues, let alone ask questions.
The couple's stories are not unique. In the 1980s and 1990s, refugees from war-torn countries such as Cambodia came en masse to the United States, where there continues to be little to no structural support for people like them in regard to, for example, health access, insurance navigation and language equity.
In California, millions of people of color are not being accurately represented in health data. When we have a complete and disaggregated demographic profile of patients, we can advance health equity at a large scale.
Senate Bill 1033 by Dr. Richard Pan would do just that. It would ensure that health plans collect patient data that focuses on addressing racial and ethnic health disparities, gender disparities and social determinants of health; improving quality of care; and addressing population health. SB 1033 would allocate funds for the state to offer technical assistance to health plans and appropriately fine health plans that do not comply. The data would continue to be protected under both state and federal laws.
We can't address what we can't see. If some communities aren't counted in data, that means they aren't counted when funding and resources come down the pipeline. It means millions will continue to face preventable health disparities. Knowledge is power, and it's about time we collect data that serves people's needs and improves the health of all communities in California.