The executive order establishes that it is the policy of the Biden administration to “pursue a comprehensive approach to advancing equity for all, including people of color and others who have been historically underserved, marginalized, and adversely affected by persistent poverty and inequality.” To that end, the order dedicates a section to establishing an interagency working group on equitable data tasked with identifying inadequacies in federal data collection policies and programs, and recommending strategies for addressing any deficiencies.
An inability to disaggregate data prevents policymakers from identifying disparate impacts of government programs on different populations in a variety of areas including health care, education, criminal justice, workforce and housing. Indeed, the U.S. Commission on Civil Rights has found that “data collection and reporting are essential to effective civil rights enforcement, and that a lack of effective civil rights data collection is problematic.”
This problem has repeatedly been on display throughout the COVID-19 pandemic. For example, at the outset of the pandemic last year, nearly half of states did not report data on race or ethnicity on those who were tested, hospitalized or died of COVID-19. And while the government has tried to take a data-driven response to the COVID-19 pandemic, a lack of data about different groups means that their needs are often hidden from policymakers.
Consider disability data: Data from New York and Pennsylvania shows that adults with intellectual and developmental disabilities have contracted and died from COVID-19 at higher rates than the rest of the population. Multiple factors may contribute to this outcome, such as pre-existing health conditions, living in a group home or other caregiving setting, or relying on public transportation. But many states do not collect and report information about disability in their COVID-19 data. As a result, government leaders have only partial visibility into the toll of the pandemic on people with disabilities, which has resulted in worse outcomes. For example, a number of states have overlooked people with disabilities in their coronavirus vaccine distribution plans, delaying access for this at-risk group.
Or consider sexual orientation and gender identity (SOGI) data: National, state and local advocacy groups have repeatedly called for COVID-19 data collection programs to include SOGI demographic data because of the unique vulnerabilities of the LGBTQ community. California issued emergency regulations last July requiring health providers to include this data on patients when reporting communicable diseases, including COVID-19, to state public health officials. However, months later, despite state legislators passing a law to codify the requirements of the emergency regulations, California still was not collecting the information. Part of the problem is that the data standard created for reporting COVID-19 health data does not include SOGI fields, so even if health providers collect it, they cannot report it.
The Biden administration does seem committed to tackling data equity for public health. President Biden signed an additional executive order calling for improved data collection and collaboration to respond to public health threats, such as COVID-19. In this order, President Biden authorized his administration to collect, analyze and share “key equity indicators” related to the pandemic across the whole of government.
While top-down leadership on these issues is welcome, there are still countless state and local data collection efforts that will need similar scrutiny. Sometimes these changes will be as simple as adding a new field to a form, while others will require more substantial work. Regardless, it is time for state and local leaders to take up this challenge to advance equality for underserved communities.
