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Michigan Coronavirus Task Force on Racial Disparities and Disaggregated Data

A Case Study
Michigan Coronavirus Task Force on Racial Disparities and Disaggregated Data
Do you see us?
This case study was developed as part of the statewide “Do You See Us?” campaign to encourage all state agencies to adopt uniform race and ethnicity data collection standards.

The Johnson Center has partnered with the Leadership Conference Education Fund to lead the campaign to enable communities to see themselves in state data — data that researchers, nonprofit organizations, foundations, policymakers, and others use to direct resources to reach the areas of greatest need. Learn more.

On April 7, 2020 — roughly one month after the first cases of COVID-19 were reported in Michigan — The Washington Post highlighted the widely disproportionate impact of the virus on Black/African American people: while only 14% of the state’s total population identified as Black/African American, this community comprised 41% of the 845 people who had died (Thebault, et al., 2020). Just two days later, Gov. Gretchen Whitmer established the Michigan Coronavirus Task Force on Racial Disparities. “This virus is holding a mirror up to our society,” said Gov. Whitmer, “and reminding us of the deep inequities in this country” (Executive Order 2020-55, 2020).

The task force — with appointees from state government, universities, and the private, nonprofit, and philanthropic sectors — was charged with “improving data collection on racial and ethnic demographic information, and greatly enhancing the sharing and analysis capabilities of equity-related data” (Michigan Coronavirus Racial Disparities Task Force, 2023). In fact, it was only due to the efforts of Michigan and a few other states to collect and publish this type of information that racial disparities were known at all in those first weeks of the pandemic (Thebault, et al., 2020). Without knowledge of these disparities, the task force and its partners in communities across the state would not have been equipped to direct resources to the communities that needed it most.

Joneigh Khaldun, Michigan’s chief medical executive from 2019–2021, was an early champion of race and ethnicity data disaggregation. “Whether it’s the opioid crisis and deaths, maternal deaths, I always encouraged our team,” she said in a 2022 interview, “when you’re looking at data sets, make sure you’re looking at race and ethnicity” (University of Michigan, 2022).

“Underfunded and Inadequate”

Without sufficient resources and a broad commitment to collect this data at the state level, however, information on race and ethnicity can be hard to come by. As Khaldun outlined the state of Michigan’s public health data system in the first weeks of the pandemic,

[I]n the early days, I believe people probably didn’t understand just how underfunded and inadequate the public health data infrastructure really is. … In the beginning, the way we were able to identify demographic information about cases was if someone actually wrote it on the lab requisition form that was shipped, literally shipped physically to the state lab in Lansing (University of Michigan, 2022).

It is no surprise, then, that authorities in early April 2020 could not determine the race of 28% of the people who had died in the state (Quesnelle, 2020a). The reporting on ethnicity was even more threadbare — later that same month, the organization Data Driven Detroit pointed out that Hispanic/Latino identity was not reported in 27% of total deaths, and Arab identity was unknown in three-quarters of all deaths (Quesnelle, 2020b).

Interventions and Improvements on Data Collection and Transparency

Over the next year, then, the task force supported efforts to improve demographic data collection. One such effort included a collaboration between the Dearborn-based nonprofit ACCESS (Arab Community Center for Economic and Social Services) and Oakland University. In this initiative, researchers disaggregated COVID-19 case and mortality data by Middle Eastern or North African descent (MENA) in order to better understand how the pandemic impacted those communities, long ignored in federal and state data collection (Michigan Coronavirus Racial Disparities Task Force, 2020). The task force also drew on other indicators — such as the Social Vulnerability Index, which uses race and ethnicity information among other data — to target efforts like public health campaigns and testing sites. In addition, the task force also guided partnerships between the Michigan Department of Health and Human Services (MDHHS) and others to develop the Michigan Safe Start Map, a public, interactive, online dashboard that could filter COVID-19 data by race and ethnicity for the user (Michigan Coronavirus Racial Disparities Task Force, 2022).

Federal Change at the State Level

The work supported by the task force continues today, in recent efforts by MDHHS to change its data collection policies and engage different racial and ethnic groups in “community conversations” on those proposed changes. Specifically, the MDHHS Office of Equity and Minority Health (OEHM) has proposed changes that largely align with new federal race and ethnicity data standards (Michigan Department of Health and Human Services, 2024). In March 2024, the federal Office of Management and Budget updated Statistical Policy Directive No. 15 for the first time in more than 25 years (OMB, 2024). Among other changes, all federal agencies that collect race and ethnicity data must now combine their separate race and ethnicity questions into a single question, add “Middle Eastern or North African” to their categories, and seek more detailed race and ethnicity data by default.

As MDHHS explained in a public notice, “currently, there is no standard way for MDHHS to collect race and ethnicity data for residents receiving services,” or for “comparing the quality of MDHHS service delivery for different race and ethnicity groups between programs” (Michigan Department of Health and Human Services, 2024). The OEHM’s proposed changes, if adopted, would make MDHHS the first agency in Michigan to formally recognize Middle Eastern and North African communities in the state.

It would also signal that the agency intends to grapple with the “consequences of longstanding structural inequalities with respect to access and utilization of health care” in underserved populations (Michigan Coronavirus Racial Disparities Task Force, 2023).

We applaud these proposed changes and look forward to their enactment — not just within MDHHS, but across all state agencies. The COVID-19 pandemic offered just one horrifying example of how systemic racism can manifest in society. Without data disaggregated by race and ethnicity, much of the work of the Michigan Coronavirus Racial Disparities Task Force may have bypassed the communities most in need. Michigan stands on the cusp of transformative change, and investing in robust data systems and prioritizing standardized data collection and reporting will greatly aid Michigan’s efforts in eliminating racial disparities in the state.