Disaggregated data has the potential to significantly address health care inequities by providing insights into previously overlooked diverse populations. The standards for federal data collection, unchanged since 1997, finally saw a significant update on March 28.

In a media briefing on May 17, hosted by Ethnic Media Services, a panel of  experts share the new changes being made and share personal stories of how insufficient data collection tactics affected them.

Speakers

  • Gail C. 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
  • Tina J. Kauh, Senior Program Officer within the Research-Evaluation-Learning Unit of the Robert Wood Johnson Foundation
  • Meeta Anand, Senior Program Director, Census and Data Equity, at The Leadership Conference Education Fund
  • Juan Rosa, National Director of Civic Engagement at Educational Fund

Significant Changes and Reclassification

Most notably, the reclassification that allows Middle Easterners and North Africans to be recognized as a distinct racial category. The new standards, which will be phased in over the course of five years, require federal agencies to use a single combined question for race and ethnicity, allowing respondents to select multiple identification options. This granular data is said to aid in the allocation of federal funds and could influence redistricting efforts.

Federal agencies, if they can justify it, may opt out the new data collection processes for being too challenging. Outdated tech at many agencies may cause delays in implementing the new standards. Initially, federal agencies will have 18 months to develop their data collection structures.

Importance of Data Collection

Dr. Gail Christopher emphasized the importance of accurate data collection. “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,” she stated.

Christopher pointed out that the changes in data collection aim to address the structural racism embedded in various US systems, including health care. She described this initiative as the first step towards transforming data systems to provide a more accurate representation of the nation’s diverse communities. “We all benefit when resources are allocated in ways that give everyone an opportunity to thrive,” she added.

Christopher, from the Robert Wood Johnson Foundation, a philanthropic organization focused on promoting health equity, organized this briefing with EMS. Other speakers at the briefing underscored the importance of properly collecting data by sharing their stories.

Dispelling the Model Minority Myth

Tina Kauh recounted her Korean American parents’ experiences after immigrating to the US in the 1970s. They owned a corner shop in Philadelphia, Pennsylvania, working 14-15 hour days, everyday. “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.” she explained.

Tina Kauh emphasized that her parents’ struggles, shared by many AAPI families, often go undocumented. As a researcher, she found it nearly impossible to secure funding to study the health and well-being of Asian Americans due to a lack of data. Asian Americans make up 6% of the population, yet less than 1% of National Institutes of Health funding is allocated to Asian health studies. This data scarcity makes it difficult to justify funding for Asian American research.

“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 sees a future where the changes would be implemented in all agencies, be it public or private. 

Being Uncounted

Meeta Anand shared her experiences of not fitting into existing racial categories. Born to a Haitian mother and an Indian father, she found herself relegated to the “other” category on forms. “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.”

“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 US, 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,”

She emphasized the importance of allowing people to accurately represent their identities as the US becomes more diverse. The Leadership Conference plans to monitor federal agencies that opt out of the new standards. Simply saying “‘it’s too hard’” is no excuse for agencies to discriminate against people from different backgrounds. 

Representation for Mixed Race Latinos

Juan Rosa discussed the significant portion of Latinos who did not see themselves reflected in the 2020 Census categories.“Thirty-five percent of Latinos marked ‘some other race,’ and 8% left the question blank./ “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 himself identifies as Black despite being born in the Dominican Republic. In the fall of 2020, while dealing with a lung infection unrelated to COVID-19, he had a transformative experience at a clinic staffed by African-American healthcare workers. A nurse, filling out a form for him, automatically marked him as Black. “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.”

Monitoring and Implementation

NALEO will closely monitor how the Census Bureau implements the new OMB standards. Particularly focusing on the representation of Afro-Latinos. This oversight aims to ensure that the new forms accurately reflect the identities and experiences of diverse communities.