The Power of Data: Addressing Racial Disparities in Maternal and Child Health

Black History Month offers a moment to reflect on past struggles, celebrate resilience, and reaffirm our commitment to a more equitable future. While progress has been made, stark racial disparities persist in healthcare – particularly in maternal and child health outcomes. This Black History Month, we're spotlighting how health information exchanges (HIEs) and health data utilities (HDUs) – and the data they enable – can be a powerful tool to reduce these disparities and support better outcomes for Black mothers and their children.

The Disparities that Demand Our Focus:

●?????? CDC data show that Black women are two to three times more likely to die from pregnancy-related complications than white women, with most of the maternal deaths being preventable.[1]

●?????? Black birthing people are also more likely to experience life-threatening conditions like preeclampsia, postpartum hemorrhage, and blood clots, as well as increased incidence of other pregnancy-related complications like preterm birth and low birth weight.[2]

●?????? Black infants experience higher rates of mortality, preterm birth, and low birth weight compared to their white counterparts.[3]

●?????? These racial disparities persist even when factoring in income, education, and other socioeconomic factors.[4]

Data: Fueling Change and Saving Lives

HIEs and HDUs hold immense potential to combat these disparities by:

●?????? Uncovering Inequities: Collecting and analyzing data on race, ethnicity, and social determinants of health (SDOH) reveals the areas and populations where disparities are most pronounced, guiding targeted interventions.

●?????? Informed Care Across Settings: Sharing data empowers providers in hospitals, clinics, and community settings with a comprehensive view of a patient's health history. This leads to more informed and culturally competent care, especially during the critical prenatal, delivery, and postpartum periods.

●?????? Bridging Gaps Through Collaboration: HIEs and HDUs facilitate data sharing between healthcare, social services, and community-based organizations. This creates a coordinated support system to address factors like housing, nutrition, and access to care.

●?????? Driving Evidence-Based Policy: Data can fuel advocacy efforts and inform policy changes to reduce systemic barriers and ensure equitable allocation of resources where they are most needed.

The Importance of Data Quality in Driving Health Equity

While HIEs and HDUs offer tremendous potential to combat disparities by enabling data sharing across the healthcare continuum, the quality of the data being exchanged is paramount.

Accurate and detailed data on race and ethnicity are crucial for understanding and addressing inequities. Unfortunately, the current data collection practices fall short. The limited categories used for race and ethnicity often fail to capture the rich diversity within the Black community, hindering efforts to understand and address specific health needs. In fact, for nearly thirty years, the federal government has used the same standards to capture data on the race and ethnicity of participants in federally-funded programs and activities, including health programs like Medicaid and CHIP. These standards influence data collection practices in state and local programs and private entities working with government programs (e.g., health insurers, hospitals, and providers).

Last year, the Office of Management and Budget (OMB) proposed revisions to address this issue. These include:

●?????? A combined question on race and ethnicity for a more nuanced understanding.

●?????? A separate category for Middle Eastern and North African individuals.

●?????? Updated terminology and definitions to be more inclusive and accurate.

These changes aim to improve the accuracy and detail of data, allowing for a better understanding of health disparities and the allocation of resources to address them more effectively.

Black History Month and Beyond: Our Call to Action

As we celebrate Black History Month and the continued journey toward health equity, this call for improved data collection goes beyond statistics. It represents a commitment to deeper understanding, equity, and dismantling systemic barriers. By ensuring accurate and representative data on race and ethnicity, we can truly illuminate the experiences of Black mothers, children, and families to inform targeted interventions.

The fight for health equity does not end on March 1. Let's leverage the power of data-sharing and collaborative action to dismantle existing disparities and build a future where health equity exists for all.

[1] Maternal mortality rates in the United States, 2021. (n.d.). https://www.cdc.gov/nchs/data/hestat/maternal-mortality/2021/maternal-mortality-rates-2021.htm

[2] Lister RL, Drake W, Scott BH, Graves C. Black Maternal Mortality-The Elephant in the Room. World J Gynecol Womens Health. 2019;3(1):10.33552/wjgwh.2019.03.000555. doi: 10.33552/wjgwh.2019.03.000555. Epub 2019 Nov 22. PMID: 32719828; PMCID: PMC7384760.

[3] Infant mortality and African Americans. (n.d.). Office of Minority Health. https://minorityhealth.hhs.gov/infant-mortality-and-african-americans#:~:text=Non%2DHispanic%20blacks%2FAfrican%20Americans,to%20non%2DHispanic%20white%20infants.

[4] Kennedy-Moulton, Kate, et al. “Maternal and Infant Health Inequality: New Evidence from Linked Administrative Data.” SSRN Electronic Journal, 2022, https://doi.org/10.2139/ssrn.4285841.