Bioethics Forum Essay
Advancing Maternal Health Equity with Data Transparency: The Case of Texas
Health equity is an ethical and human rights principle that holds that everyone should have the opportunity to receive fair and just health. Health disparities—health differences between groups closely linked to social, economic, and/or environmental disadvantage–serve as a metric for evaluating progress toward health equity. Thus, an equity lens requires prompt access to racial/ethnic and other forms of demographic data to characterize and confront inequities in health and health care. So, it is concerning that Texas has delayed the release of the full report of the most up-to-date data on maternal health, further threatening the health of marginalized women, children, and families.
The importance of ethical and timely dissemination of race/ethnicity data to advance health equity was underscored in a recent report by the Robert Wood Johnson Foundation, “Health Equity: Everyone Counts the Need for Disaggregated Data on Marginalized or Excluded Racial/Ethnic Group”: “When data are unavailable for a marginalized racial/ethnic group, their needs are rendered invisible when policies are made, resources are allocated, and programs are designed and implemented.”
Characterized as a maternal health crisis, Black women in the United States are three times more likely to die from preventable pregnancy complications than white women. In light of this salient health injustice, the White House Blueprint for Addressing the Maternal Health Crisis outlines several priority areas to improve maternal health and outcomes in the U.S. They include “advancing data collection, standardization, harmonization, transparency, and research” to address the maternal health crisis. These priority areas are important for every state to implement, particularly, states such as Texas where the maternal mortality rate is slightly above the national level.
The expected release of the Texas maternal health report was slated for September but was delayed, according to the interim commissioner of the Department of State Health Services, to allow a full examination of 140 of the 147 pregnancy-and related childbirth-related deaths from 2019, most of which were preventable deaths. Earlier this week, key data and recommendations from the pending report were released citing a disproportionate increase in severe maternal morbidity (SMM) among Black women. Notably, while obstetric hemorrhage remained the leading cause of SMM and rates of hemorrhage-related deaths decreased for every population tracked in Texas, the rate increased among Black women.
While more evidence is needed to elucidate the drivers of adverse maternal health outcomes and inequities on a national level, in Texas, current policies such as inadequate Medicaid coverage directly influence the quality of maternal health care. Moreover, Black women scholars have long raised the importance of systematically centering the voices and perspectives of Black women in collective dialogue to inform equitable, respectful, and comprehensive reproductive and maternal health care. To ensure that reproductive health care is more accessible and equitable for all Texans, immediate access to reliable and accurate data is urgently needed to develop strategies with attention to the health care needs and experiences of Black women.
Generating more actionable public health information that reaches the general public is a national priority. At the height of the Covid-19 pandemic, misinformation and disinformation about the virus spread rapidly which fueled the public health crisis and led to continued distrust and frustration among the public. This is especially problematic since we know that institutional distrust is shaped by untrustworthy actions and withholding vital data contributes and reduces confidence in health care and public health systems. Thus, strengthening the public’s trust in public health and health care systems calls for advocating for policy changes and interventions informed by health data and engaging trusted stakeholders to disseminate information and data to the affected communities.
As expressed by maternal health advocates and activists, the state of Texas has an ethical obligation to address the pressing maternal health needs of Black women through evidence-based policies and interventions to achieve maternal health equity. Insufficient data and resources complicate efforts to appropriately intervene and prevent the public and other stakeholders from making scientifically informed health decisions. To be clear, not releasing data continues to weaken the public’s confidence in public health systems, health care systems, and local public officials. These harms have affected minoritized populations during the Covid pandemic.
Structural, political, economic, and environmental injustices continue to negatively affect the health of Black people in the U.S. Withholding resources, such as maternal health data that indicates clear racial disparities, is a direct manifestation of structural racism. Indeed, failure to disseminate accurate, reliable, and up-to-date data to the public reflecting the health status and needs of minoritized populations further perpetuates health inequities and contributes to anti-Black racism in health care. Identifying the social and structural determinants that drive the maternal mortality crisis through equitable and inclusive data collection and reporting represents a commitment to maternal health equity and ending the maternal health crisis among Black women.
Alice Story, PhD, MPH, is a senior research assistant at the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Faith E. Fletcher, PhD, MA, is an assistant professor in the Center for Medical Ethics and Health Policy at Baylor and a Hastings Center senior advisor and fellow. (@FaithEFletcher)
Thank you for this commentary. The situation is frustrating, sad, and cruel, in my view. A number of us are currently taking a grad course in ethics of health care policy and your essay, with its useful links, is a model for what we are studying on the importance of timely and credible data to craft policy It is not explicit in the article, but is there a sense of what is causing the delay? Again, thank you for your thoughtful and informative piece.