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Expert Perspective: States’ Reporting of COVID-19 Health Equity Data (State Health & Value Strategies Cross-Post)May 14, 2020:
The following content is cross-posted from State Health and Value Strategies. It was first published on April 22, 2020.
Authors: Emily Zylla and Lacey Hartman, SHADAC
As the coronavirus (COVID-19) crisis evolves, it has become increasingly clear that vulnerable subpopulations are being disproportionately impacted. Unsurprisingly, these disparately affected groups are the same ones that have long experienced stark health disparities, such as communities of color, low-income populations, and those that reside in congregate living facilities (nursing homes, jails, shelters, etc.). The impacts of the pandemic are amplified for these populations both in terms of risk of infection (e.g., likelihood of living in crowded spaces, being part of the essential workforce, reliance on public transportation—all of which make social distancing more difficult) and poorer health outcomes due to higher rates of comorbid conditions that increase the severity of the disease.
Many are calling for states and the federal government to make data that tracks these impacts for vulnerable populations more available and transparent. A recent Health Affairs piece notes that these data are critical not only for understanding how the disease will spread, but also to grasp the extent of “socially disparate spill-over effects on people’s economic well-being and safety.” On April 18, the Centers for Disease Control and Prevention (CDC) released new nationwide data showing the race and ethnicity characteristics of COVID-19 cases. Although a significant amount of race data (76 percent) was reported as missing, the data available show that 30 percent of COVID-19 cases are African Americans, who only make up 13 percent of the overall U.S. population.
As we noted in an earlier expert perspective, all states are reporting some data on the crisis, but the type and granularity of information varies considerably across states. In this expert perspective, we look in more depth at which states are regularly reporting data that helps shed light on the health equity issues of this crisis. Specifically, we provide interactive maps that explore the extent to which all 50 states and the District of Columbia are reporting (as of May 13) data breakdowns by age, gender, race, ethnicity, and health care workers for both cases of and deaths from COVID-19. We also provide maps of states reporting cases and deaths at the ZIP code level and in congregate living settings (nursing homes, correctional facilities, etc.). Finally, we summarize available information on health equity data related to hospitalizations and testing. Going forward, SHADAC will be tracking and updating this data on a weekly basis.
The map below shows how states are reporting health equity data for positive COVID-19 cases, and can be filtered to highlight which states are reporting by each health equity category. States marked by a darker shade highlight color are reporting more data breakdown categories than lighter-shaded states. Clicking on a state provides a link to each state’s data-reporting website along with more detailed information about which breakdowns a state is reporting.
Almost all states are reporting COVID-19 cases by age (46) and gender (47). The number of states reporting cases by race (44) and ethnicity (41) has increased significantly, up from only 27 and 21, respectively, one month ago. To date, 19 states are reporting on the total number of cases among health care workers.
In addition to reporting data by race and ethnicity, 13 states (California, Connecticut, Delaware, Georgia, Indiana, Kansas, Kentucky, Massachusetts, New Hampshire, New York, Oregon, Utah, and Washington) are also providing information about how the distribution of cases by these factors compares to the underlying population distribution. This is helpful for gaining an initial understanding of how COVID-19 is disproportionately impacting certain populations; for example, 30 percent of cases reported in Washington state as of April 30 were among Hispanics, who make up only 13 percent of the overall population. An important limitation, however, is the extent to which data is missing. Looking again at Washington, the state also reported that 34 percent of their cases have unknown or missing race and ethnicity data. Nevertheless, providing the data that is available, along with the information about the degree to which the data is missing, is critical for ongoing monitoring of the pandemic.
Congregate Living Facilities
Because COVID-19 is most likely to spread to people who are in close contact, individuals residing in congregate living facilities (nursing homes, jails, homeless shelters, universities, etc.), and who are already some of health care’s most vulnerable populations, face heightened infection threats. Widespread outbreaks have already been reported in long-term care facilities and jails across the country. The tracking and reporting of COVID-19 outbreaks by setting is an important step in states’ efforts to achieve a full understanding of which vulnerable populations are being impacted and how. To date, almost two-thirds of states (31) are reporting cases by residence type.
Although all states are providing information about COVID cases at the county level, several experts have urged for reporting at even lower levels of geography. This is helpful not only for developing a more refined understanding of disease spread, but also as a proxy for understanding differential impacts by socioeconomic status. Although it is not perfect, geography is a strong predictor of socioeconomic status and associated health disparities, and providing information at the ZIP code or other more granular levels of geography can be useful both for tracking and making preparations to mitigate the impacts of the virus in areas with fewer health care resources and ability to social distance. Thirteen states are currently making information about cases available at the ZIP code level.
States may wish to overlay information about COVID infection with ZIP code level data related to key socioeconomic factors, such as median income and educational attainment. Information about accessing and using these data is available in a recent issue brief also published by State Health and Value Strategies.
This map shows what COVID-19 mortality data states are reporting, and can be filtered to highlight which states are reporting deaths by each health equity category.
As of May 13, states are reporting fewer demographic breakdowns of death data than of case data. Over half of states report deaths by age (37) and gender (34). A similar number of states report deaths by race (39) and ethnicity (35). Of the states that report cases by residence setting (31), most of those (24) are also reporting deaths by residence setting.
Data from China and Italy, as well as preliminary data from the U.S., show that individuals with underlying conditions such as diabetes and cardiovascular disease appear to be at higher risk for death from COVID-19. Because people of color experience these underlying conditions at higher rates than the general public, they will resultantly be at greater risk of dying from COVID-19. For example, American Indian/Alaskan Native men have a significantly higher prevalence of diabetes (14.5 percent) than non-Hispanic white men (8.6 percent). For this reason, it will be helpful for states to both track and understand the comorbidities of individuals who die from COVID-19. To date, seven states (Alabama, Louisiana, Georgia, Massachusetts, Mississippi, New York, and Oregon) are reporting the number of deaths by underlying conditions. Of those, only Mississippi is currently reporting deaths broken down by both underlying conditions and race (see Figure 3).
Similar to the inequitable mortality rates associated with underlying conditions, national studies show that populations of color are also more likely to be hospitalized for COVID-19, again suggesting how these groups are disproportionately affected by the virus. For example, recent Centers for Disease Control and Prevention (CDC) surveillance data show that between March 1 and 30, approximately 33.1 percent of the hospitalized COVID-19 patients were black, although they made up only 18 percent of the study’s overall population. In our scan, we identified 14 states that are reporting hospitalization data by health equity categories (Figure 4).
The need for more widespread testing has received considerable attention, with many public health experts noting that the ability to reopen the economy is dependent on ramped up efforts to test, track, and quarantine new cases. Many states are tracking aggregate data on the number of tests conducted; however, our scan revealed only five states that are providing testing information by age and gender, and only three—Delaware, Illinois and Kansas – are also disaggregating testing data by race and ethnicity. As the availability of testing becomes more widespread, it will be critical to track information that allows public health officials and policymakers to understand the extent to which vulnerable populations are able to access COVID-19 tests.