Disaggregated data is America’s super power: It’s crucial to be counted

Disaggregated data could play a major role in resolving the U.S.’s health care inequities, revealing information about diverse populations that have not previously been counted.

Standards for federal data collection have not changed since 1997. But in a monumental move, the Office of Management and Budget March 28 announced new standards for data collection, to be implemented by the Census Bureau and other federal agencies.

Most significantly, changes in reclassification allows Middle Easterners and North Africans to be identified as a racial category, a move the MENA community has fought for for several years.

Granular data

The new standards — which will be implemented over 5 years — require federal agencies to use one combined question for race and ethnicity. Respondents can select multiple options on how they identify. Advocates say the granular data will also help determine the allocation of federal funds, and could impact redistricting.

Federal agencies can opt out if they are able to justify that the new process for data collection is too difficult. Hardware and software is largely outdated at many agencies, and may lead to delays in implementing the new standards. Federal agencies will initially have 18 months to develop their structures for collecting data.

“When it comes to the health and viability of our democracy, we simply must have systems in place that count for the lived experiences of our diverse population. And that’s why this moment in time, is in many ways,  a racial reckoning in this country,” said Dr. Gail Christopher, executive director of the National Collaborative for Health Equity and director of the Robert Wood Johnson Foundation’s National Commission to Transform Public Health Data Systems.

Structural racism

Changes in data collection will attempt to address the structural racism embedded within so many systems in the US including health care, said Christopher. “This is the first step in terms of what has to be done to transform our data systems and to disaggregate our data so that it is a more accurate representation of our superpower, our diverse communities.”

“We all benefit when our resources are allocated in ways that will give everyone an opportunity to truly thrive,” she said.

Christopher spoke at a May 17 Ethnic Media Services news briefing, organized in collaboration with the Robert Wood Johnson Foundation, a philanthropic organization dedicated to promoting health equity. Other speakers at the briefing advocated for the importance of accurate data collection, in part, by sharing their own rich narratives.

Model minority myth

Tina Kauh, senior program officer within the Research-Evaluation-Learning Unit of RWJF, spoke of her Korean American parents, who immigrated to the U.S. in the 1970s, and owned a corner shop in Philadelphia, Pennsylvania. “They worked 14 or 15 hour days, seven days a week. The well-known model minority myth would claim people like my parents were thriving because they were such ‘hard workers.’ But I saw firsthand how the challenges that they faced impacted their social, emotional, and physical health and well-being.”

Her parents’ experience was shared by many other AAPI families, but there were few narratives about their struggles, said Kauh. As a researcher, she said, it was nearly impossible to find funding to study the health and well-being of Asian Americans, because data did not exist.

‘So little data’

Though Asian Americans currently constitute 6% of the population, less than 1% of National Institutes of Health funding is directed towards studying Asian health. Kauh said that, as a funder now, she often finds it difficult to justify funding for Asian American research. “There is so little data to demonstrate why it is necessary.”

“With the changes recently made by the OMB, we now have an exciting opportunity to improve how race and ethnicity data are collected, analyzed, reported, and disseminated to advance health equity. This is a key step that will better reflect the nation’s diversity and lead to more equitable distribution of resources,” said Kauh. She hoped that the new standards would be adopted by public and private agencies outside of the federal government.

Invisible in the data

Born of a Haitian mother and an Indian father, Meeta Anand, senior program director of Census and Data Equity at The Leadership Conference Education Fund, had no box to check on forms as she was growing up. “There was no such thing as multi-select. There was no opportunity to truly reflect who I was. And so I hung out in that famous ‘other’ box.”

She noted that organizations have some concerns about a single combined question. “But what’s great about this is that you can check Asian and Black. You can check Asian and Hispanic. You can check two different ethnicities within Hispanic.”

“As we start seeing more Meetas come into the U.S., and more people from different backgrounds meeting in our country and having their own children, we continue to see diversification. We need to allow people to see themselves in the form,” said Anand.

The Leadership Conference will be scrutinizing federal agencies who opt out, said Anand. “’It’s too hard to change our systems’ should not be an acceptable answer.”

Mixed race Latinos

In the 2020 Census, 35% of Latinos in 2020 marked that they were of some other race, and 8% of all respondents left that question actually blank, said Juan Rosa, national director of Civic Engagement at the NALEO Educational Fund. “27 million out of 63 million that were counted in the census did not see themselves reflected in those race categories. So for us, it’s very important for the community to allow itself to self-respond in the way that their houses are actually composed.”

Rosa was born in the Dominican Republic, but identifies as Black, as do many in his community. A pivotal moment in recognizing his identity came in the fall of 2020, when he had a lung infection not related to COVID.

“I went into my neighborhood doctor just to check. And it’s an African-American doctor with African-American nurses. I’m having a lot of trouble walking at this point, let alone filling out a questionnaire. A nurse walked me through it and was filling it out herself.”

Implementation

“When it came to ask about race, the nurse automatically filled out Black for me. And out of all the things that I remember from that time, aside from being in the hospital for 10 days afterward,  was that nurse and the vindication and the acknowledgement and the visibility that I got at one of the lowest points of my life,” said Rosa. “So I have a very personal relationship to the work that we do.”

Over the next few years, NALEO will also be monitoring how the Census Bureau implements the new OMB standards, with a focus on how Afro-Latinos like himself will be represented by the new forms, said Rosa. (Sunita Sohrabji/Ethnic Media Services)