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Disaggregating Data Is Essential for Closing Health Disparities


For the first time since 1997, the Office of Management and Budget (OMB) expanded its race and ethnicity standards to capture historically excluded communities who will now be visible in federal data collection. In the first of three briefings on health inequities sponsored by the Robert Wood Johnson Foundation, experts and advocates will explore how better data collection will help direct resources and interventions where they are needed most, especially to communities facing the greatest health challenges. 

The briefing hosted by Ethnic Media Services touched on what the updated race and ethnicity standards include; how OMB plans to engage with communities to ensure clarity and broad adoption; the need for additional testing and research to implement the standards; and what states are already implementing high standards.

Tina J. Kauh, Senior Program Officer within the Research-Evaluation-Learning Unit of the Robert Wood Johnson Foundation (RWJF), shared her insights and personal connection to this crucial development.

“We worked side by side with communities, practitioners, and institutions to get to health equity faster and pave the way together to a future where health is no longer a privilege but a right,” Kauh said. One of the foundation’s key strategies was supporting research and filling data gaps to deepen the understanding of health and well-being.

Kauh framed the importance of the OMB’s changes by recounting her own experiences. “My parents were first-generation Korean immigrants who came to the United States in the late 1970s. For over 30 years, they owned a corner store in Philadelphia, working 14-15 hour days, seven days a week, facing numerous cultural and language barriers daily.” She highlighted how these challenges impacted their social, emotional, and physical well-being, countering the model minority myth that overlooks such struggles.

Her academic journey led her to realize the lack of comprehensive data on Asian Americans, a gap that perpetuated stereotypes and hindered targeted health interventions. “When I started my doctoral program, I quickly realized there wasn’t much data about Asian Americans, and what did exist often focused on educational outcomes, reinforcing the model minority narrative.”

The OMB’s recent changes include creating a new Middle Eastern or North African ethnic category and requiring more detailed race and ethnicity data collection by federal agencies. “These changes will better reflect the nation’s diversity and lead to more equitable distribution of resources and targeted interventions,” Kauh noted.

She emphasized the systemic and structural racism that has driven the lack of data for Asian Americans and other populations. “The racial stereotype of Asians as the model minority perpetuates a myth that they’re all faring well, which contributes to the notion that we don’t need to collect or report data about them.”

RWJF has long been committed to transforming health knowledge systems by supporting equitable and anti-racist research practices. Kauh pointed out the potential impact of the OMB’s new standards on the broader field of research. “Many researchers use OMB minimum standards as the default approach for collecting demographic data. These changes have the potential to truly change the field of research and data systems that inform strategies to promote equity and health and well-being.”

Despite the progress, Kauh warned of challenges ahead. Agencies can request to opt out of the new requirements if deemed a burden, which could perpetuate inequities. “It’s critical for the OMB to ask who gets to decide what’s a burden and whose perspective is prioritized in that decision-making process. If not, inequities will persist within the nation’s data systems.”

Kauh stressed the importance of robust implementation and community involvement to ensure the updated guidelines advance health and equity for all. “Strong implementation means devoting ample resources at the state and local levels and working in tandem with community-based groups. This is a significant step toward a future where health equity is realized for everyone.”

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, emphasized the critical need for accurate and inclusive data to harness the potential of America’s diversity.

“I am always reminded by my adult children and others that the diversity of this country has the potential to be our superpower,” Christopher stated. “But for that to be realized, people have to be counted. People have to not be invisible.”

Christopher stressed the importance of systems that accurately reflect the lived experiences of the diverse U.S. population for the health and viability of democracy. “This moment in time, in many ways, is a follow-up to the moment that some media folks called a racial reckoning in this country,” she explained. While acknowledging that the U.S. has not fully reckoned with its racialized past, Christopher pointed out significant steps forward that are still ongoing.

“I am reminded of an African proverb which says, ‘To stumble is not to fall, but to move forward faster.’ We have this opportunity to move forward faster with these changes in data and the opportunity to aggregate the data with more specificity,” she said, highlighting the potential for progress through improved data practices.

Christopher also shared her encounters with healthcare stereotypes, recounting a painful experience where a well-meaning physician’s decision, based on racial stereotypes, resulted in the loss of her vision in one eye. “This experience underscored the importance of having the right information and data, and moving beyond the application of stereotypes,” she emphasized.

As the leader of the Robert Wood Johnson Foundation’s commission to transform public health data systems, Christopher oversaw the production of a report advocating for centering equity in public health data narratives and systems. The commission’s recommendations included robust community engagement and addressing the legacy of structural racism.

“The fact that OMB made this decision is the result of community advocacy, nonprofit advocacy, and leaders in the health equity space,” she noted, referring to the recent updates to the Federal Office of Management and Budget’s data standards. These updates are seen as a foundational step, not the final goal, in transforming data systems to better reflect America’s diversity.

Christopher highlighted the need for significant resource investment to ensure proper implementation and understanding at all levels. “We know that doing this is in all of our best interests. We are bombarded with polarizing narratives today, but we don’t have to make this part of that. Recognizing that we will all benefit when our information and our data is truly reflective of our country’s diversity is crucial.”

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