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. All states now report race or ethnicity data for either COVID-19 cases or mortalities, a marked improvement from back in April when just over half (27) of states were reporting COVID-19 cases by race, and only 22 states were reporting COVID-19 deaths by race. 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, 38 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.)
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:
- On September 8th, California became the first state in the nation to require the collection of sexual orientation and gender identity data for all COVID-19 patients.
- Pennsylvania announced it will work with a new data collection platform to collect sexual orientation and gender identity data.
- Minnesota is reporting language needs for positive cases interviewed and language by county of residence
- Washington is reporting case counts by language spoken.
- 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 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, led by the Indiana Black Legislative Caucus and in collaboration with the Interagency State Council on Black and Minority Health, the Indiana State Department of Health Office of Minority Health, and the Indiana Minority Health Coalition, was charged with studying racial disparities in health care and health care outcomes as it relates to COVID-19. The Task Force recommended the collection, stratification, analysis and reporting of race, ethnicity and preferred language data; and recommended action plans and annual reports of race, ethnicity, and preferred language outcomes.
- Louisiana: A COVID-19 Health Equity Task Force examined how health inequities are affecting communities that are most impacted by the coronavirus. The Task Force’s Subcommittee on COVID-19 Data and Analysis made several recommendations in its report, including: establishing standardized protocols to ensure that information is consistently collected across the multiple testing sites, especially those pertaining to racial and ethnic identity; ensuring data collection occurs in collaboration with trusted organizations, e.g. tribal organizations and faith-based organizations or nonprofits within the Asian community; creating a data warehouse where harmonized data can be easily extracted for analysis; and allocating resources allocated to the Louisiana Department of Health to accomplish these goals.
- 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 was charged with developing a recommended strategy to address the disproportionate impacts of the COVID-19 pandemic. Initial recommendations included: Adopting and following best practices (outlined in the report) for equitable data collection, analysis, dissemination and utilization; dedicating staff with specific expertise in equitable data best practice methodologies; and developing internal protocols that require the use of a vetted and approved Equity Review Tool analysis for all programmatic and policy work.
- Ohio: The Minority Health Strike Force was charged with addressing the disproportionate impact of COVID-19 on minority populations in the state. The strike force was comprised of four subcommittees: data and research; education and outreach; health care; and resources. The groups’ Blueprint report included data-specific recommendations to improve data collection and reporting, have state agencies develop dashboards to monitor inequities and disparities, and consider the need for sufficient samples to identify disparities in groups with small population sizes. The Governor’s subsequent Executive Response included a commitment to: collect state-level health care quality information stratified by race, ethnicity, and language data; identify the contributing and confounding factor affecting the health disparities; identify and targeting the resources where interventions may be best applied; adopt of standards by state agencies to achieve a normalized set of data that uses the same categorization scheme; and establish evaluation criteria of impacts to inform policy.
- Pennsylvania: The Pennsylvania COVID-19 Response Task Force on Health Disparity is charged with identifying obstacles that cause disparity for marginalized populations. The group collaborated 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. The group recommended instituting a statewide standard around racial/ethnic data collection that mirrors the standards in the Affordable Care Act, and disaggregating Asian health data.
- 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.