Advances in States’ Reporting of COVID-19 Health Equity Data
Emily Zylla & Sydney Bernard, SHADAC
Throughout the coronavirus pandemic SHADAC has been tracking which states are regularly reporting data that could help shed light on the health equity issues of this crisis. Collecting disaggregated demographic data on the impact of COVID-19 is one way to advance health equity during response efforts. We have found that all states are reporting some data on the coronavirus (COVID-19) outbreak, but the type and granularity of information varies considerably across states. In this expert perspective we provide updated interactive maps that explore the current status of all 50 states and the District of Columbia’s reporting of COVID-19 case and death data breakdowns by age, gender, race, ethnicity, and health care workers; and provide an update on the status of states’ reporting of hospitalization and testing data by demographic categories. We also highlight examples of states that are undertaking new, or additional, COVID-19 related data collection, reporting, or research activities to understand health disparities across populations. Finally, we summarize new federal guidance related to COVID-19 data reporting.
Current Status of COVID-19 Health Equity Reporting
The number of states reporting disaggregated COVID-19 case and mortality data has increased significantly since the start of the pandemic.
For example, back in April, just over half (27) of states were reporting COVID-19 cases by race, and 22 states were reporting COVID-19 deaths by race. To-date, only one state (North Dakota) does not report any race or ethnicity data for either COVID-19 cases or mortalities. Additionally, at the beginning of the epidemic only three states reported information about how the distribution of cases by race/ethnicity compared to the state’s underlying population distribution. To date, 35 states are reporting their data in this way, which is helpful for understanding the extent to which COVID-19 is disproportionately impacting certain populations.
At the start of the pandemic 13 states were reporting COVID-19 cases by residence type, and only six states were reporting deaths by residence type. Today, all states report cases by residence type, and 47 states report deaths by residence type. Similarly, the number of states reporting the number of health care workers with positive COVID-19 cases has increased from 10 to 26, and the number of states reporting COVID-19 deaths by underlying conditions has increased from 4 to 17.
We expect that as states work to comply with the new federal reporting guidance (see below), the number of states reporting disaggregated case and testing data by various indicators will continue to increase. The number of states reporting disaggregated hospitalization and testing data, however, remains low, just over half (26) of states reporting data breakdowns and only eight states reporting some type of testing data breakdowns.
The maps below show how states are reporting disaggregated data for positive COVID-19 cases (Figure 1) and COVID-19 mortality data (Figure 2), and can be filtered to highlight which states are reporting by each health equity category. States marked by a darker shade of 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.
In our scan, we identified 26 states that are reporting hospitalization data for some sub populations, but of those only 18 are reporting hospitalization data by race or ethnicity. (Figure 3.)
Figure 3. States Reporting COVID-19 Hospitalization Data by Health Equity Categories
Source: SHADAC analysis of states’ COVID-19 data reporting
Our scan revealed eight states that are providing testing information by age and gender, and only five—Delaware, Illinois, Indiana, Kansas, and Nevada are also disaggregating testing data by race and ethnicity.
New COVID-19 Related Health Equity Data Activity
Several states are exploring, or beginning to report, additional data. For example:
- Minnesota is reporting language needs for positive cases interviewed and language by county of residence
- Pennsylvania announced it will work with a new data collection platform to collect sexual orientation and gender identity data.
- Massachusetts signed into law an act addressing COVID-19 data collection, requiring the Department of Public Health to compile, collect, and report several demographic factors, including whether an individual hospitalized speaks English as a second language.
- A bill in Californiais advancing with bipartisan support requiring the collection of sexual orientation and gender identity data for all COVID-19 patients.
A number of states have also formed health equity task forces, several of which are charged with looking at what additional data could be collected and reported. For example:
- Colorado: A COVID-19 Health Equity Response Team, headed by the Office of Health Equity, was formed to look at inequities and ways to prevent gaps from widening during the pandemic. One of the Response Team’s tasks is to ensure racial and ethnicity COVID-19 data are accessible, transparent and used in decision-making.
- Indiana: A legislative task force is charged with studying racial disparities in health care and health care outcomes as it relates to COVID-19. A final report that includes a corrective action plan to address health disparities and the COVID-19 response is due by November 1, 2020.
- Louisiana: A COVID-19 Health Equity Task Force will examine how health inequities are affecting communities that are most impacted by the coronavirus. The task force is charged with making sure communities disproportionately impacted receive information on COVID-19 safety and prevention; providing the medical community with best practices and protocols for treating communities with underlying medical conditions and observed health disparities; and ensuring testing availability and ease of access for all communities. This task force’s work will result in the creation of a Dashboard on Health Equity.
- Massachusetts: A COVID-19 Diversity Task Force will study and make policy recommendations that address current disparities in the health care system for underserved or underrepresented cultural, racial, ethnic, and linguistic populations and people with disabilities during the COVID-19 pandemic. A final report is due by August 1, 2020.
- Michigan: The Michigan Coronavirus Task Force on Racial Disparities serves as an advisory board within the state’s Department of Health and Human Services. Among several charges, the Task Force will: study racial disparities of COVID-19 in Michigan and recommend action to overcome the disparities; recommend actions to increase transparency in reporting data regarding the racial and ethnic impact of COVID-19 and remove barriers to accessing physical and mental health services; and ensure stakeholders are informed, educated, and empowered with information on the racial disparities of COVID-19.
- New Hampshire: The Governor’s COVID-19 Equity Response Team is charged with developing a recommended strategy to address the disproportionate impacts of the COVID-19 pandemic. The team is expected to identify a strategy to improve the quality and completeness of race/ethnicity reporting and explore capacity to disaggregate COVID-19 indicators by other significant sociodemographic identifiers.
- Ohio: The Minority Health Strike Force is charged with addressing the disproportionate impact of COVID-19 on minority populations in the state. The strike force is comprised of four subcommittees: data and research; education and outreach; health care; and resources. An interim report published in June included data-specific recommendations such as: improving staff training on how to collect and report data including race, ethnicity, and primary language for all COVID-19 patients; and establishing a COVID-19 voluntary vulnerable population registry to allow for a prospective cohort study that could include collecting data on barriers to social distancing, access to care, depression and anxiety, work-related outcomes and other topics.
- Pennsylvania: The Pennsylvania COVID-19 Response Task Force on Health Disparity is charged with identifying obstacles that cause disparity for marginalized populations. The group is collaborating with community members, stakeholders, and legislators to send recommendations to the Governor for addressing issues related to a higher incidence of COVID-19 among minorities.
- Tennessee: The Tennessee Department of Health, Office of Minority Health, launched a statewide Health Disparities Task Force to: examine existing data, monitor trends, and hear from those living, working and serving Tennessee communities to generate responsive solutions and policies to reduce health disparities.
- Vermont: A Racial Equity Task Force will undertake projects designed to promote racial, ethnic and cultural equity, including evaluating structures of support for racially diverse populations, with a focus on the racial disparities in health outcomes highlighted by COVID-19. It will submit recommendations to the Governor on the COVID-19 project by August 15.
CARES Act Reporting Requirements
In March 2020 Congress passed, and the President signed, the Coronavirus Aid, Relief, and Economic Security (CARES) Act. The statute required “every laboratory that performs or analyzes a test that is intended to detect SARSCoV-2 or to diagnose a possible case of COVID-19” to report the results from each such test to the Secretary of the Department of Health and Human Services (HHS), and authorized HHS to prescribe the form and manner of such reporting. On June 4, HHS released new guidance outlining the data elements required for reporting, which included, among other elements:
- Patient age
- Patient race
- Patient ethnicity
- Patient sex
- Patient residence zip code
- Patient residence county
- If the patient is employed in health care
- If the patient is a resident in a congregate care setting (including nursing homes, residential care for people with intellectual and developmental disabilities, psychiatric treatment facilities, group homes, board and care homes, homeless shelter, foster care or other setting)
- If the patient is hospitalized
- If the patient is pregnant
The guidance also indicates that additional data elements may be requested by state, local, or federal health departments at any time. If required data elements are not available, providers, laboratories and public health departments are encouraged to leverage resources like state, regional, or national Health Information Exchanges or Networks to obtain missing, required information. Reporting of these data elements must begin no later than August 1, 2020. While this guidance applies to all laboratories, it does not require states or local public health departments to report COVID-19 mortality data by any specific demographic breakdowns.