The Coronavirus Resource Center has launched a Disparity Explorer to highlight where and how COVID-19 led to harsher outcomes for different demographic groups. These data show a disproportionate burden on many minority communities, including Latinx people. Disparity data should spur policymakers and medical professionals to take informed, targeted action.
Lack of detailed demographic data about COVID-19’s impact has hindered resource allocation, scientific research, and community outreach and prevented a clear picture of COVID and the people who are hardest hit. The entire landscape of demographic data including age, sex/gender, race, and ethnicity is woefully lacking. The challenges with collecting this data and these disparities reflect significant barriers to addressing existing social determinants of health, and are core to understanding and addressing health injustice. The Coronavirus Resource Center has recently released a new visualization to highlight these demographic disparities, the challenges of collecting this data and bring them into the national dialogue. The new Disparity Explorer visualization is available here, and a sample of race data from Indiana is shown below.
The content of this visualization reflects demographic data provided by the state in COVID-19 dashboard compared to census-level data and is updated every two weeks. This data reflects reporting as of this writing on Nov. 18, 2021. If there were no biological differences, legal barriers, and societal inequalities that would cause a person to be more likely to get infected or affected by SARS-CoV-2 virus or receive a vaccine, the percentage of COVID-19 tests, cases, deaths, and vaccinations would be nearly identical to population composition. As shown with Indiana above, 9.4% of the state is Black according to the census, but only 7.2% of vaccines have been administered to Black people.
Of course, there are limitations to this data set. No states are offering complete demographic data for every single COVID-19 patient, so there can be sampling biases if, for instance, data only came from major city centers with the resources to provide these data. Also, some state data sets contain sizable “unknown” metrics which, if allocated disproportionately to certain demographic groups, could completely reverse trends observed. Some disparities can also compound on each other (e.g. if a group is underrepresented in tests, then their count for cases could actually be much higher if they were accurately represented). Due to this variability, the CRC has only highlighted a demographic difference as a health disparity if the divergence is over 5% of what would be expected and there is not an egregious amount of “unknown” data points.
There are many communities in the United States that have suffered an undue impact of COVID-19, but today I want to focus on the Latinx community as shown through state ethnicity data from the Disparity Explorer. As discussed last week with Dr. Kathleen Page, COVID-19 has hit the Latinx community hard and there are many complications with obtaining accurate data on certain subsections of the community. Many essential workers who are Latinos and Latinas often live in crowded housing and take public transportation, increasing their exposure risks. Dr. Page also noted that undocumented immigrants who are Latinx are hesitant to seek medical care when they get sick or provide accurate data even when confidentiality is guaranteed. This can result in an underrepresentation of Latinx people in most metrics. All of this goes to say that a better understanding of the impact of COVID-19 on the Latinx community is going to be essential to resolving many of these health injustices.
Based on our data analysis, 28 of the 45 states that disaggregate COVID-19 case data by ethnicity also attribute more cases to Latinx individuals than would be expected based on census data as of Nov. 18. Five of those states show that Latinx people have experienced at least 1.5 times the amount of COVID-19 cases than they would have in a just, equitable society. The disparity in North Carolina is the nation’s worst: Latinx people make up 18% of cases while they comprise just 9.4% of the state’s population. The 10 states with the greatest disparities are shown in the table above.
However, we have reason to believe that these disparities may be even larger than reported because of underutilization of testing by the Latinx community, as shown by the data below. Only seven states currently provide testing data disaggregated by ethnicity. Six of those states show that fewer Latinx individuals are getting tested than expected (below). This could be due to many reasons including access to testing, support from employers to get tested, and hesitancy to seek healthcare and share data. With data from only seven states, we cannot extrapolate the trend to the country, but this is demonstrative of how under-sampling and bias can skew case data to seem less disparate.
The purpose of digging into these data is not to shame states that have demographic disparities. It is to highlight how these data can provide healthcare workers and policymakers with important insights into communities. Demographic data can help health providers design targeted outreach and design their messages to match the intended audiences with data that shows the specific impact of COVID-19 in their communities. Policymakers should use these data to help prioritize resources and improve access to testing, care, and vaccinations for underserved populations. Everyone can benefit from better, more complete demographic data.
However, as of now, no states provide comprehensive, standardized demographic data for cases, testing, death, and vaccinations. Data disaggregated by age, sex/gender, race, and ethnicity is incomplete, not comparable, and contributes to the challenges of containing COVID. But above all the challenges, testing is the most neglected data stream despite the criticality of testing data to inform our public health response. States that are collecting these data need to expand their efforts to better sample their populations and to share these data publicly-doing so could help many people now and in future public health crises. There is a troubling trend of states beginning to scale back COVID data, instead of taking the lessons we have learned from the last 18 months and applying them to real health reforms. Instead of trying to put the genie back in the bottle states should invest in the collection of standard demographic data to help need to immediately start collecting and sharing demographic data to help reveal health disparities in our communities, which vary from state to state. From the data we do have, it is clear that there are inequities in our public health and social infrastructure. If policymakers and health professionals want to end both the COVID-19 pandemic and systemic inequalities, we need to improve how we collect and share demographic data with the public.