Making Race, Ethnicity and Language (REL) Data a REaLity

  ·  Health Policy Hub   ·   Eva Marie Stahl

photo credit: bigstockimages.com

Since taking office, President Bident has signed a flurry of executive orders (EOs). These orders are not simply symbolic; they make concrete policy change and jumpstart the Biden-Harris Administration agenda committed to driving more equity into systems and policies. Most of these EOs are designed to reverse the harmful policies put in place during the Trump administration (see our recent post on work requirements) while also reorienting our country toward a more positive trajectory that centers equity and justice.

Two such EOs include: Ensuring a Data-Driven Response to COVID-19 and Future High-Consequence Public Health Threats and On Advancing Racial Equity and Support for Underserved Communities Through the Federal Government. We are excited about the tools these provide the administration to advance an equity agenda that is rooted in transparency and data. Having access to robust disaggregated race, ethnicity and language (REL) data allows policymakers to accurately assess the harm to underrepresented populations, build policy and program interventions that address inequity and collectively shape an equitable future with accountability to one another.

Throughout the campaign, both President Biden and Vice President Harris communicated their commitment to addressing inequities – namely, racial inequity. These EOs represent a first step in addressing the shortcomings of our current data infrastructure. The EOs direct needed resources, design accountability systems and require cross-sector, inter-agency alignment to identify and respond to inequities people confront in their access to public resources. Health equity work is not real unless it is driven by REL data.

What do the EOs do?

The day after his inauguration, President Biden issued an EO on racial equity as a down payment on that campaign promise, Ensuring a Data-Driven Response to COVID-19 and Future High-Consequence Public Health Threats. Coming so early in the administration, this EO was intended to increase public trust and enhance the role of agencies in collecting data around COVID-19 including testing, treatment, vaccinations and hospitalization. The goal is to make this data available in real-time, enabling a more nimble response that is transparent across all levels of government. Specifically, the EO:

  • Enhances data collection and agency capacity to collaboratively respond to public health emergencies. The order requires key cabinet members to designate a senior official to lead on COVID-19 pandemic related data-issues. The official will “coordinate the agencies’ collection, provision, and analysis of data, including key equity indicators, regarding the COVID-19 response, as well as their sharing of such data with State, local, Tribal, and territorial authorities.” The Director of Office of Management and Budget (OMB) is tasked with developing guidance to improve data collection that also protects people’s privacy.
  • Strengthens public health data systems. This requires the Secretary of HHS to work with other relevant agencies to assess the effectiveness and interoperability and connectivity of public health data systems and their capacity to respond to public health threats, such as COVID-19. The Secretary will issue a report.
  • Protects Privacy. There is clear language in the EO that protects patient privacy. “Nothing in this order shall compel or authorize the disclosure of privileged information, law-enforcement information, national-security information, personal information, or information the disclosure of which is prohibited by law.”

The second EO, On Advancing Racial Equity and Support for Underserved Communities Through the Federal Government, outlines a set of policy directives that range from cross-agency coordination, equity assessment and a data working group to ensure all agencies are collecting disaggregated data that is both accurate and transparent to the best of their ability. It assigns responsibility to the Domestic Policy Council (DPC) to work across all agencies to “embed equity principles, policies, and approaches across the Federal Government.” The DPC is an important body that is tasked with developing and implementing the Administration’s domestic policy objectives.

Beyond the inter-agency coordination led by DPC, there are several key elements of the EO that are worth lifting up:

  • Assess agency’s role in creating barriers to access. The Office of Management and Budget (OMB) is directed to “study methods for assessing whether agency policies and actions create or exacerbate barriers to full and equal participation by all eligible individuals” and “assist agencies in assessing equity with respect to race, ethnicity, religion, income, geography, gender identity, sexual orientation, and disability.” This initial assessment must be completed in the six months following issuance of the EO. Furthermore, this assessment led by OMB must consider the barriers that some populations face in accessing services, securing government contracts and ensuring sufficient operational resources to protect the civil rights of underrepresented groups.
  • Engage community members. The order calls on agencies to “increase coordination, communication, and engagement with community-based organizations and civil rights organizations.” At the center of health justice and racial justice agenda are people. People who face longstanding barriers to services and supports to advance their health and economic security and invest in the futures of their children and future generations have been generationally disadvantaged and their lived experiences and voices must be a part of any policy solution. It is unclear how the administration will convene ‘community,’ but it is an opportunity for advocates to weigh in.
  • Creates Data Working Group. The order creates an Equitable Data Working Group that will work across agencies, reporting to the President, on the inadequacies of federal data collection and develop strategies to make data more robust and transparent and “capture the diversity of the American people.” As we’ve seen from the COVID-19 pandemic, disaggregated data collection is inconsistent and lacks transparency; without disaggregated racial and ethnic data, we lack a complete picture of our communities and their experiences and needs.
  • Revokes the Trump Administration’s Executive Order 13950 from 2020 (Combating Race and Sex Stereotyping). This was outlined in our Undo the Harm Agenda from earlier this year. The Trump administration worked to prohibit agencies, including federal contractors, from engaging in efforts to combat racism. 

What is next?

These executive orders establish a north star for data enthusiasts but also provides a blueprint for advocates to follow as they monitor progress over the next six months. Advocates can be active in assessing these recommendations and weighing in along the way.

On February 26, the Equitable Data Working Group met via zoom – a meeting that was open to the public and provided a glimpse at the issues the group would begin to tackle over the coming months. Led by Dr. Marcella Nunez-Smith, the group listened intently to a presentation by Dr. Nancy Krieger as she walked through the deep inequities people face, and offered a window into the complexities and challenges of doing REL data collection well. It will require advocacy for additional resources and a commitment to building the needed infrastructure. But for the first time is a long time, it feels hopeful.