In a recent briefing sponsored by the Robert Wood Johnson Foundation (RWJF), experts and advocates convened to discuss the transformative potential of disaggregating health data to address disparities effectively. Organized by Ethnic Media Services and RWJF, this event marked a significant milestone with the Office of Management and Budget (OMB) updating its race and ethnicity standards for the first time since 1997, aiming to include historically excluded communities in federal data collection efforts.
The briefing brought together a distinguished panel of speakers who shared insights and perspectives on the updated federal standards. Gail C. Christopher, Executive Director of the National Collaborative for Health Equity and Director of RWJF’s National Commission to Transform Public Health Data Systems, Tina J. Kauh, Senior Program Officer, Research-Evaluation-Learning Unit, RWJF, Meeta Anand, Senior Program Director, Census and Data Equity, The Leadership Conference Education Fund, and Juan Rosa, National Director of Civic Engagement, NALEO Educational Fund, all participated in the discussion.
The revised OMB standards expand the inclusion of underrepresented groups in federal data, allowing for more targeted resource allocation and interventions. These changes include a new Middle Eastern or North African ethnic category, reflecting America’s diverse population more accurately. Previous standards often obscured significant variations within racial and ethnic groups, hindering effective policy and program development. The new standards now mandate the collection of more detailed race and ethnicity data, ensuring a clearer picture of health disparities.
Effective implementation at federal, state, and local levels is crucial to realizing the potential of these new standards. Community engagement and adequate resources are necessary to ensure comprehensive and accurate data collection. RWJF remains committed to supporting anti-racist research practices and policies, advocating for equitable representation in health data. Continued collaboration with community-based organizations and rigorous implementation are essential for addressing health inequities
The virtual briefing, organized jointly by Ethnic Media Services and RWJF, set the stage for a crucial discussion on the updated federal standards for health data collection. Gail C. Christopher, opening the session, emphasized the transformative impact of disaggregated data in achieving health equity. She expressed gratitude to the organizers and her fellow panelists, highlighting the importance of their work in the fight against health disparities.
Gail highlighted the power of America’s diversity, describing it as a superpower that requires accurate data to leverage effectively. She underscored the vital role of inclusive data systems in the health and vitality of democracy, noting that the current moment follows steps taken during a racial reckoning. She shared a personal story about the stereotypical treatment she received from a physician, illustrating the harmful effects of biased algorithms and protocols.
Gail further discussed her leadership in RWJF’s commission on transforming public health data systems, which recommended centering equity and community engagement. She credited community and nonprofit advocacy for influencing the OMB’s decision to update data standards and emphasized the need to address the legacy of structural racism in national policies.
She celebrated the OMB’s decision as a monumental change but stressed that it’s just the first step. Gail recognized the need for significant resources and community engagement to ensure proper implementation, emphasizing the importance of accurate, disaggregated data to benefit all communities and allocate resources fairly.
Following Gail’s impactful remarks, Mita Anand, representing the Leadership Conference Education Fund, provided a comprehensive overview of the implications of new data disaggregation standards. She stressed the importance of accurate representation and community engagement in achieving equitable outcomes, acknowledging Gail Christopher’s impactful leadership and Tina’s visionary role in funding their work.
Mita highlighted Tina’s vision, which enabled the coalition’s national-level advocacy efforts, stressing the importance of vision in initiating transformative change. She discussed the implications of national-level efforts on state-level policies and practices, emphasizing the broader impact of disaggregated data standards.
Mita emphasized that data are always contextual, underscoring that disaggregated data allows individuals to tell more of their personal stories and lived experiences. She shared her personal experience of navigating identity on forms, illustrating the limitations of past data collection methods that didn’t reflect her multi-ethnic background.
She discussed the importance of new data standards that allow for multi-select options, enabling individuals to more accurately reflect their identities. Mita acknowledged that implementing these new standards will take time and called on agencies to develop clear processes for data collection and coding.
Addressing concerns about privacy in data disaggregation, Mita advocated for community engagement and a balanced approach to data collection and use. She noted that the addition of new categories like MENA reflects ongoing changes in society and urged agencies to overcome challenges in updating their systems.
Rosa from Malayo, the National Director of Civic Engagement at the League of Education Voters, shared valuable insights and personal experiences during the briefing. She thanked Sunita, Sandy, and Ethnic Media Services, as well as her fellow panelists and reporters, for joining the call to discuss the updates to federal standards and their community benefits.
Rosa highlighted Malayo’s role in advocating for census participation since the 1990 census, ensuring an accurate count of the Latino population. She emphasized the critical role of policy advocacy in determining the success or failure of these efforts, particularly in ensuring adequate funding and practices for the Census Bureau.
Rosa shared her personal experience, having been born in the Dominican Republic and moving to the United States at age 10. She reflected on the historical racial dynamics between the Dominican Republic and Haiti and how they shaped identity. Rosa expressed pride in marking herself as racially black in the U.S. census, contrasting it with the limited options in the Dominican Republic where she would have been categorized differently.
Expressing concerns about how Afro-Latinos are represented on the census questionnaire, Rosa stressed the importance of clear and inclusive checkboxes. She committed to working closely with the Census Bureau to ensure adequate outreach and education campaigns to empower Afro-Latinos to accurately represent themselves.
In conclusion, Rosa emphasized the need for ongoing advocacy to prevent negative impacts on communities like Afro-Latinos in the 2030 census and beyond. The briefing underscored the transformative impact of updated data standards on health equity efforts, poised to drive more targeted and effective public health strategies.
RWJF’s ongoing commitment to this cause ensures that everyone in America, regardless of background, is counted and seen. For more information and ongoing updates, visit RWJF’s website.
#HealthEquity #DataDisaggregation #PublicHealth #FederalStandards #CommunityEngagement #HealthPolicy #DataEquity #Census2020 #EthnicMedia #RWJF
