No one sees themselves in the word “other.” They also don't like being lumped into broad categories that don't explain who they really are. And when this happens with data used to inform policy decisions, these people often become invisible.
Without a choice, nearly 50 million U.S. residents, many of them Latin Americans, checked the “other” box in the last census. 129% increase From the previous decade. Additionally, people from other backgrounds, such as Asian Americans and American Indians, are often forced to check boxes that hide the nuances of their identities behind broad racial and ethnic categories. .
In our rapidly diversifying country, many people lack options that accurately reflect their race or ethnicity. And it's dangerous. For example, during the COVID-19 pandemic, people in the Filipino community were dying at a disproportionately high rate. Policymakers were unaware, because data from the Centers for Disease Control and Prevention showed Asian Americans had lower infection rates and similar hospitalization and death rates than white Americans. .
My Filipino friends have told me stories about how many people in their families and towns have died from COVID-19. Why were these high death rates not shown in official data?
My colleagues and I dug deeper with a crowdsourcing website where people post their memories of Filipino healthcare workers who have died from COVID-19. So we found the answer.
Across the United States, Filipinos working in health care experienced higher mortality rates, but this was not reflected in data that grouped Asian Americans into one category. This was especially true among Filipino nurses. 4 percent What percentage of the total U.S. nursing workforce still accounts for 26.4% Percentage of nurse deaths in the United States due to the novel coronavirus disease (COVID-19) at the beginning of the pandemic.
These nurses were caring for critically ill patients without wearing the necessary personal protective equipment to ensure their safety. Their experiences are not reflected in the data, and their needs remain unmet, resulting in high mortality rates. And not only did they get sick, they transmitted the virus to others in the community, creating a cycle of illness and death.
Public health data is intended to help policy makers address the needs of all communities. Having the right data, data that allows us to understand differences within population subgroups, can help us pinpoint the needs of specific communities, better allocate resources, and develop more effective solutions. Masu. But if our data fails to capture the diversity of our population, we may fail to meet the needs of millions of people.
Earlier this year, the Office of Management and Budget Updated Federal Data Collection Standards For the first time since 1997, we aim to more accurately reflect our nation's rapidly growing racial and ethnic diversity. For many, this will be the first time they've seen themselves represented in federal data.
OMB's recent changes were a key component of the calls to action and recommendations from the Robert Wood Johnson Foundation's National Commission on Public Health Data Systems Transformation, of which I was a member.
Previous censuses required respondents to select an ethnicity such as “Hispanic or Latino” and then American Indian or Alaska Native, Asian, Black or African American, Native Hawaiian or other Pacific Islander, and They were asked to choose from five white racial categories. Alternatively, you can select the option “Other Race.''
The next census will feature seven broad racial and ethnic categories, including a new option: Middle Eastern or North African (MENA). This option allows people in the area to accurately identify themselves, rather than being forced to choose “other races” or “white.” Respondents can also select multiple categories and add details with subcategories.
But the new standards go further by not only encouraging, but requiring federal agencies to collect more detailed racial and ethnic data to ensure more nuanced data analysis. .
These are all important steps to make our nation's public health data more comprehensive and equitable, allowing us to direct resources and interventions to those most in need.
However, concerns remain. Will federal agencies adequately understand and implement the new standards? There are also questions about how the data will be reported. How nuanced should the reporting be? What is the best way to present the data?
These and other questions need to be addressed urgently because the next census will take place without our knowledge.
At the same time, protecting privacy, confidentiality, and statistical stability remains a top priority. However, it is also important that the data reflects all people, regardless of race or ethnicity. It is also possible to do both. of California Health Interview SurveyThe nation's largest state health study, which I lead, is proof of that.
The COVID-19 pandemic has shown us that data can mean the difference between life and death. These are more than just numbers. They are the stories of people's lives and provide a pathway to how those lives can be improved and saved.
All the people behind those stories deserve to be seen for who they are, rather than being seen as “other” or obscured by broad categories of race or ethnicity. . We must act now to ensure everyone is counted by the next census.
Dr. Nines Ponce is director of the UCLA Center for Health Policy Research, principal investigator of the California Health Interview Study, and member of the Robert Wood Johnson Foundation Commission on Transforming Public Health Data Systems.
