On his first day in office, President Biden enacted a series of administrative measures to reverse a number of President Trump’s policies and address the ongoing coronavirus pandemic. One of them included an executive order to promote racial justice and support underserved communities. In particular, the mandate recognizes that achieving this goal will be difficult, if not impossible, without better data. This is a lesson that many state and local governments should take to heart by revising their survey policies to ensure the data is fair.
The executive order states that it is the policy of the Biden government to “take a comprehensive approach to promoting justice for all, including people of color and others historically underserved, marginalized and affected by persistent poverty and inequality”. To this end, the ordinance devotes a section to the establishment of an Interagency Working Group on Fair Data, whose job it is to identify inadequacies in federal data collection guidelines and programs and to recommend strategies for correcting any deficiencies.
The inability to disaggregate data prevents policymakers from identifying different impacts of government programs on different populations in a variety of areas including healthcare, education, criminal justice, labor and housing. Indeed, the US Civil Rights Commission has found that “the collection and reporting of data is essential to effective civil rights enforcement and that a lack of effective civil rights data collection is problematic”.
This problem was repeatedly encountered during the COVID-19 pandemic. For example, when the pandemic started last year, nearly half of the states did not report any data on the race or ethnicity of people who were tested for COVID-19, hospitalized, or died of COVID-19. And while the government has tried to be data-driven to respond to the COVID-19 pandemic, a lack of data on various 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 are more likely to develop and die from COVID-19 than the rest of the population. Several factors can contribute to this result, e.g. B. pre-existing health conditions, living in a group home or another care facility or dependence on public transport. However, many states do not collect or report information about disability in their COVID-19 data. As a result, heads of government have only partial insight into the impact of the pandemic on people with disabilities, which has led to poorer results. 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 stakeholders have repeatedly requested that COVID-19 data collection programs contain SOGI demographic data due to the unique vulnerabilities of the LGBTQ community. California passed emergency regulations last July requiring healthcare providers to include this data about patients when reporting communicable diseases, including COVID-19, to state health officials. Months later, however, California did not collect the information, despite legislature passing a law codifying the requirements of the emergency regulations. Part of the problem is that the data standard created for reporting COVID-19 health data does not include SOGI fields. Even if healthcare providers record this, they cannot report it.
The Biden government appears determined to tackle data equality 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 that arrangement, President Biden authorized his government to collect, analyze and share “key equity indicators” related to the pandemic across the government.
While top-down leadership on these issues is welcome, there are still myriad state and local data collection efforts that deserve similar scrutiny. Sometimes these changes are as simple as adding a new field to a form, while others require more work. Regardless, it is time for state and local leaders to embrace this challenge to advance equality for underserved communities.
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