JMIR Publications

ABSTRACT

Background:

There is an urgent need for the consistent collection of demographic data on coronavirus disease 2019 (COVID-19) morbidity and mortality and sharing in open and accessible ways. Due to lack of consistency during the initial spread, demand grew for transparency in public reporting of data, including the introduction of the Equitable Data Collection and Disclosure on COVID-19 Act into Congress to require collection and reporting of demographic COVID-19 data on testing, treatments, and deaths by race, ethnicity, sex, age, primary language, socioeconomic status, disability, and county. Endorsed by the American Public Health Association, the legislation further recommends collecting race and ethnicity in line with Office and Management and Budget’s (OMB) federal guidelines. To our knowledge, no studies have evaluated how COVID-19 demographic data have been collected before, immediately after, and six months following the introduction of this legislation.

Objective:

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

Methods:

We reviewed health department websites from all 50 states and Washington, DC. We evaluated how each state reported age, sex, 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, immediately after, and six months following the 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), sex of deaths (P=.0027), and race/ethnicity of cases (P=.003) and deaths (P=.005) immediately after and six months following (all p-values <.05) the introduction of the legislation. The largest increases came from states reporting race and ethnicity of cases (18 states pre-act, 31 states post-act, and 46 states six months follow-up) and deaths (13 states pre-act, 25 states post-act, and 39 states six months follow-up). Although more health departments reported race/ethnicity based on federal requirements (P<.0001), over half (56.9%) still did not report all racial and ethnic groups based on OMB guidelines (5 states pre-act, 22 states post-act, 27 states six months follow-up). The number of health departments who made their COVID-19 data available to download significantly increased from 7 to 23 (P=<.0001) from our initial data collection in April to six months follow-up in October 2020.

Conclusions:

Although increased demand for disaggregations has improved public 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.