Health Equity Cannot Be Achieved Without Data Equity

CHICAGO - To reduce inequities in the U.S. health system, the Data Equity Coalition is calling for standardized data collection methods around race, ethnicity, language (REL), sexual orientation, gender identity (SOGI) and disability status through a new series of issue briefs.

"Data standardization is crucial to advancing health equity and creating a better system of health-one centered on trust," said Blue Cross Blue Shield Association President and CEO, Kim Keck. "Data is more than just numbers-data represents real people. When every part of the health care system collects the same inclusive information, we can work together to ensure people get the care that they need."

Significant inequities plague the U.S. health care system and disproportionately impact historically marginalized racial, ethnic, socioeconomic and LGBTQ+ communities. As a result, these underserved and under-represented communities experience birth complications at higher rates, face greater barriers to accessing mental health care and are more likely to die from treatable and preventable conditions. Without clear data standards, these equity gaps will persist.

"NMQF's mission is to reduce patient risk by assuring optimal care for all," said National Minority Quality Forum President and CEO, Gary Puckrein, Ph.D. "Our vision is an American health services research, delivery, and financing system whose operating principle is to reduce patient risk for amenable morbidity and mortality while improving quality of life. Within that context, partnering with BCBSA and other engaged organizations on data equity has been, and continues to be logical and essential."

For the first time since 1997, the Office of Management and Budget published revised federal standards for maintaining, collecting and presenting federal data on race and ethnicity, but more progress is needed to better reflect the changing demographics of the U.S. population.

Among other recommendations to advance true data equity, the Data Equity Coalition calls for:

• Ensuring gender identity measures allow non-cisgender people to properly reflect their identities in responses
• Disaggregating race and ethnicity data to the maximum extent possible
• Ensuring REL and SOGI indicators are captured and routinely monitored for maternal health outcomes
• The implementation of robust cybersecurity standards to ensure the data collected is safe from technological breaches and hacks

Leaders from the organizations authoring the white papers said the following:

Eduardo Sanchez, M.D., M.P.H., FAAFP., Chief Medical Officer for Prevention, American Heart Association
"If we can see it, we can address it. Data disaggregation allows us to detect differences, if they exist, between and within populations, and to design policies and programs that can help eliminate health disparities and achieve health equity."

Linda Goler Blount, M.P.H., President, Black Women's Health Imperative
"Working within a data equity approach means that we must not only collect data but use data to learn how to make the necessary changes in health systems to keep Black women healthy in maternal care."

Indivar Dutta-Gupta, President & Executive Director, The Center for Law and Social Policy
"As an organization focused on eliminating poverty, policymakers need robust data to address economic insecurity and advance health equity and data far too often neglects the very communities with the most distinct needs and who are ill-served by our current systems."

Schroeder Stribling, President & CEO, Mental Health America
"We must ensure that our data collection standards reflect the country's changing demographics. More equitable data is key to addressing the health care system's persistent inequities-especially as it relates to mental health care access for members of underserved communities."

Kierra Johnson, Executive Director, National LGBTQ Task Force
"The National LGBTQ Task Force urges the expansion and improvement of sexual orientation, gender identity and sex characteristics data collection to improve health equity. We implore the administration, Congress, and government agencies to allocate resources that meet the needs of LGBTQ individuals."

For more information, please find the complete set of issue briefs here.

About Blue Cross Blue Shield Association

The Blue Cross and Blue Shield Association is a national federation of independent, community-based and locally operated Blue Cross and Blue Shield companies that collectively provide health care coverage for one in three Americans.

About the National Minority Quality Forum

Founded in 1998, National Minority Quality Forum (NMQF) is a United States-based, health care research, education and advocacy organization whose mission is to reduce patient risk and advance health equity. NMQF utilizes data and research to support and mobilize healthcare organizations, leaders, policymakers, and patients in advocating for optimal care for every individual, especially those in minoritized communities. For more information, please visit http://www.nmqf.org.

American Heart Association

The American Heart Association is a relentless force for a world of longer, healthier lives. We are dedicated to ensuring equitable health in all communities. Through collaboration with numerous organizations, and powered by millions of volunteers, we fund innovative research, advocate for the public's health and share lifesaving resources. The Dallas-based organization has been a leading source of health information for a century. During 2024 - our Centennial year - we celebrate our rich 100-year history and accomplishments. As we forge ahead into our second century of bold discovery and impact our vision is to advance health and hope for everyone, everywhere. Connect with us on heart.org, Facebook, X or by calling 1-800-AHA-USA1.

Black Women's Health Imperative

The Black Women's Health Imperative is a national non-profit organization dedicated to advancing the health and well-being of Black women and girls. With a 40-year history of groundbreaking advocacy and research, BWHI remains committed to addressing the unique health challenges faced by Black women and ensuring their voices are heard in healthcare policy and practice.

Center for Law and Social Policy

The Center for Law and Social Policy (CLASP) is a national, nonpartisan, anti-poverty organization advancing policy solutions for people with low incomes, with a focus on addressing systemic racism as the primary cause of poverty for communities of color.

Mental Health America

Mental Health America is the nation's leading community-driven nonprofit dedicated to promoting mental health and well-being, resilience, recovery, and closing the mental health equity gap. Mental Health America's work is driven by its commitment to promote mental health as a critical part of whole person health, including prevention services for all; early identification and intervention for those at risk; and integrated care, services and supports for those who need them. Learn more at MHAnational.org.

National LGBTQ Task Force

The National LGBTQ Task Force advances full freedom, justice, and equality for LGBTQ people. We are building a future where everyone can be free to be their entire selves in every aspect of their lives. Today, despite all the progress we have made to end discrimination, millions of LGBTQ people face barriers in every aspect of their lives: in housing, employment, healthcare, retirement, and basic human rights. Those barriers must go.