Why It Matters That Information On Race, Ethnicity, Gender, And Disability Are Measured Accurately And Completely

With the passage of the Affordable Care Act over a 11 years ago, a statute was included that required the reporting on race, ethnicity, gender and disability in all federally sponsored data collection systems.  The supporters of this statute were particularly mindful that these four descriptive characteristics helped identify populations that historically had poorer health and well-being due in large part, to lack of access to social and economic advantages including, healthy lifestyle opportunities and quality health care. The statute called for standardizing how these key characteristics were to be defined and those definitions were published and ready for implementation by 2011. The vision was for uniform, ongoing data on health and wellbeing metrics that could be used in targeting federal resources and programs to address inequities due to social and economic factors.

Over the next decade, there was modest progress in integrating these standard measures into data collection systems.  Also, the standard definitions continued to evolve as the U.S. population became more diverse and as we learned more sensitive ways to accurately define and capture our country’s data on race, gender, and disability diversity, and, in particular, in relation to distinguishing inequities. In tracking some specific progress, we now have a number of federal statistical surveys, surveillance systems, and health and other programs, that have incorporated the U.S Department of Health and Human Services’ recommended standard question set for disability identifiers. These data allow for more meaningful strategies to be implemented to reach people with various types of disability across federal, state, local and other jurisdictional programs and policies.

Unfortunately, during emergency response situations, the focus of those on the front line–in the field, in the clinics, and in public health–is on reporting accurately the specifics of the disease, with less focus on who is impacted.  In the context of COVID-19, all the focus early on in the pandemic was to better describe this newly emerging disease. Depending on how dire the circumstances, obtaining descriptive information may require some guessing on the part of the person who is completing the case report form, something they may be reluctant or instructed not to do. To compound this challenge, there may be a reluctance by those who are being asked to disclose their personal information, to not want to do so.  Why this happens is multifactorial — fear of stigmatization, fear of retaliation–in general, not feeling safe to disclose personal information.  It may be safer and easier to leave that information blank.

As a society we need to understand and communicate why information on race and ethnicity, gender diversity, and disability status matters—to members of these groups, to those who are tasked with eliciting the information, and to all of us who want to address equity head on.  For the most part, these four constructs represent groups of individuals who because of experiences, lack of opportunities, and threats, have been historically marginalized.  These basic descriptive constructs, measured well, will allow us to hold ourselves accountable for ensuring an equitable response and outcome—both during times of emergency as well as outside of that context.

About the Author

Coleen A. Boyle, PhD, MS Hyg

Dr. Boyle is an adjunct professor in the Center for Leadership in Disability at the Georgia State University School of Public Health and serves as the COVID-19 Research Advisor at the CDC Foundation. Dr. Boyle began her public health career at the Centers for Disease Control and Prevention in 1984 as part of a large effort to study the adverse health effects of exposure to Agent Orange, an herbicide used during the Vietnam War. Following that project, she joined CDC’s work in birth defects and developmental disabilities holding various positions of increasing responsibility until her appointment as the Director of CDC’s National Center on Birth Defects and Disabilities in 2010. She held that position until her retirement from CDC in early 2020.

Dr. Boyle’s interest and expertise span a number of areas related to child health and disability. She directed a major public health response on cochlear implants and risk of meningitis, resulting in the recall of a particular implant device and helped guide the Nation’s emergency response on reducing the potentially devastating impact of the Zika virus on birth defects and child development. Dr. Boyle led the development of CDC’s autism research and surveillance activities that have documented the changing prevalence of autism in the United States and she contributed widely to the field of newborn screening overseeing CDC’s work in newborn hearing and congenital heart disorder screening.

Dr. Boyle was trained in epidemiology and biostatistics at the University of Pittsburgh, School of Public Health and did postdoctoral work at the Yale School of Public Health. She has twice awarded CDC’s highest recognition for scientific excellence, the Charles C. Shepard Award, for her scientific work and on her retirement from CDC was honored
with the Excellence in Public Health Service Award by the American Academy of Pediatrics and the HRSA Maternal and Child Health Bureau Title V Lifetime Achievement Award.