The Data Equity Coalition, supported by key health and advocacy groups, pushes for updated and standardized demographic data collection to tackle health disparities in marginalized communities across the United States.
The Data Equity Coalition, in collaboration with several leading health and advocacy organizations, has issued a call for the standardization of data collection methods concerning critical demographic markers which it argues are essential to combat persistent health inequities in the United States. These markers include race, ethnicity, language, sexual orientation, gender identity, and disability status. This initiative highlights a concerted effort to address disparities that disproportionately affect historically marginalized communities including racial and ethnic minorities, LGBTQ+ people, and those with disabilities.
The importance of standardized data cannot be overstated in efforts to tackle systemic inequities within the healthcare system. By ensuring that all facets of healthcare gather consistent and comprehensive demographic information, healthcare providers can better identify and address specific needs, ultimately leading to more equitable health outcomes. Kim Keck, President and CEO of the Blue Cross Blue Shield Association, emphasized the personal impact of data, stating that it “represents real people” whose care can be dramatically improved through standardized information collection.
The U.S. health system’s existing inequities are well-documented, with marginalized communities facing higher rates of birth complications, greater barriers to mental health care access, and increased mortality from treatable conditions. National Minority Quality Forum’s President and CEO, Dr. Gary Puckrein, pointed out that achieving equity is not only a matter of social justice but also optimal care, thereby reducing patient risk across the board.
The push for standardized, inclusive data collection is also a response to outdated federal guidelines, with the last revision made in 1997 by the Office of Management and Budget. The suggestion is that these standards no longer reflect the U.S.’s evolving demographics, necessitating an urgent update to enhance data representation and utility.
Key recommendations from the Data Equity Coalition include enabling non-cisgender individuals to accurately represent their identities, disaggregating race and ethnicity data where possible, monitoring indicators specifically for maternal health outcomes, and enhancing cybersecurity measures to protect the integrity of sensitive data.
Statements from leaders across various health organizations underscore the widespread support for this initiative. Dr. Eduardo Sanchez of the American Heart Association highlighted the critical role of disaggregated data in crafting effective policies and interventions. Linda Goler Blount from the Black Women’s Health Imperative and Indivar Dutta-Gupta of the Center for Law and Social Policy emphasized the necessity of utilizing data to drive systemic changes, particularly in fields like economic security and health.
Additionally, Schroeder Stribling from Mental Health America and Kierra Johnson from the National LGBTQ Task Force brought attention to the tailored data needs of mental health services and the LGBTQ community, respectively, emphasizing the broader implications of data equity on overall health equity.
This coalition marks a significant step in addressing health disparities through data-driven strategies, suggesting a future where healthcare equity isn’t an ideal but a reality, underpinned by detailed, accurate, and secure data collection and analysis.
