JMIR Publications

ABSTRACT

Background:

There is an urgent need for the unified and consistent collection of demographic data on coronavirus disease 2019 (COVID-19) morbidity and mortality and the sharing of data in open and accessible ways. Due to lack of consistency and transparency during the initial spread of COVID-19, the Equitable Data Collection and Disclosure on COVID-19 Act was introduced into Congress to require collection and reporting of demographic COVID-19 data on testing, treatments, and deaths by race, ethnicity, sex, age, disability, and socioeconomic status. The bill recommends collecting data on race and ethnicity in line with federal standards, including the Office and Management and Budget’s (OMB) guidelines for collecting race and ethnicity. To our knowledge, no studies have evaluated how all of the aforementioned demographic data points have been collected before and after the introduction of this legislation in April 2020.

Objective:

The objective of this study was to evaluate differences in reporting and availability of COVID-19 demographic data by US state health departments and Washington, DC before and after the introduction of Equitable Data Collection and Disclosure on COVID-19 Act in Congress on April 21, 2020.

Methods:

In this quasi-experimental study, we reviewed health department websites from all 50 states and Washington, DC. We evaluated how each state reported age, gender, and race/ethnicity of cases and deaths and how they made COVID-19 data available (charts and tables only, dashboards, machine-actionable by downloading) before and after introduction of legislation.

Results:

We found statistically significant increases in the number of health departments reporting the age of COVID-19 cases (P=.045) and deaths (P=.0016), gender of deaths (P=.0027) and race/ethnicity of cases (P=.003) and deaths (P=.005). More health departments reported race/ethnicity based on federal requirements (P<.0001), although over half (56.9%) still did not report all racial and ethnic groups based on OMB guidelines. The number of health departments who made their COVID-19 data available to download significantly increased from 7 to 11 (P=.005).

Conclusions:

Although increased demand for disaggregations has improved reporting of demographics across health departments, there is an urgent need for the introduced legislation to be passed for the US to consistently collect and make characteristics of COVID-19 cases and deaths available to allocate resources to mitigate the spread of this disease.