Latinx Race and Ethnicity Data Gaps: The HACER Campaign and a Call to Action

As of July 1, 2022, more than 87 million reported cases and one million deaths were attributed to COVID-19 in the United States.¹ The COVID-19 pandemic continues to illuminate health, social, and institutional inequities nationally.

Latinx Impact

As of July 1, 2022, 126 891 Latinx people in the United States have died from COVID-19, representing the greatest number of deaths for any minoritized or marginalized race or ethnic group for which data are available.¹ Latinx people comprise a quarter of all US COVID-19 cases (n = 12 808 026).¹ These numbers are likely an undercount, as the data issues raised in this article show. Latinx children also have been inequitably affected by the loss of a primary or secondary caregiver and other adverse childhood experiences because of the pandemic.² Despite these devastating impacts and likely undercounts, the true impact of the COVID-19 pandemic on Latinx people will not be fully understood until emerging inequities in mortality for specific Latinx subpopulations—including younger adults and children—and inequities in long COVID-19 and other associated disabilities are illuminated.

In 2021, the Centers for Disease Control and Prevention declared racism a public health crisis.³ Building on this awareness of structural racism, we recognize that the Latinx community was made vulnerable to COVID-19 because of limited essential worker protections, decades of systemic exclusion and institutional racism, and inequitable access to health care services, public health interventions, personal protective equipment, and other key resources.^4–8 This resulted in disproportionately high rates of infection, hospitalization, and mortality in Latinx communities.^7,8

The pandemic also highlighted the fundamental need to identify and address the gaps and limitations in the public health data infrastructure, which inhibit our ability to address the needs of the Latinx community. Our work builds on previous efforts that illuminate how the public health data infrastructure fails the Latinx communities by rendering the population invisible and limiting scientific and public discourse on Latinx health.^4,9

In the following sections, we highlight three key data issues that were salient for the Latinx community during the COVID-19 pandemic (Table 1).

TABLE 1—

Critical Data Gaps in Latinx Communities, and HACER Recommendations

Issue	Standard Definition	Health Equity Implication in Latinx Community	HACER Solution to Counter Data Gap
Lack of accurate data collection	Data collection does not accurately capture all Latinx data because 1. Not capturing Hispanic/Latino ethnicity data; 2. Ethnicity data are not reconciled with cumulative data; 3. Lack of culturally responsive data collection methods.	If Latinx data are missing, then this will lead to undercounts and underrepresentation in reporting and decision-making.	Standardize collection and reporting of • Race and ethnicity; • Preferred language; • Industry and occupation data.
Lack of accurate data reporting	Data reporting does not capture the full scope of Latinx infection and mortality rates due to COVID-19 and other diseases.	The underreporting of ethnicity surveillance data does not provide decision-makers with the most accurate picture to make the best decisions for Latinx communities.	Ensure that data collection and reporting tools are multicultural and multilingual, particularly in the Spanish language.
Lack of data standardization	The lack of data standardization of the word used to identify ethnicity categories, “country of origin,” and “ancestry.”	With the lack of standardization of words, classifications, and categories, there is an underrepresentation of the Latinx community in data and reporting.	Develop and share a plan for classifying LHS+ and other ethnic minorities that are not being properly categorized to data collection agencies.

Note. HACER = Health Access for Communities in Emergency Response; LHS+ = Latina/e/o/x, Hispanic, and Spanish origin.

Data Issue 1: Lack of Accurate Data Collection

Data collection is essential for accurately representing the health impact and equitably supporting each community during a public health emergency. Although the Office of Management and Budget (OMB) defines a Hispanic/Latino ethnic data collection category (Table A, available as a supplement to the online version of this article at http://www.ajph.org), this category is not captured systematically across local, state, or other non-federally funded data collection systems.¹⁰ For example, although Hispanic or Latino is an ethnic category, per OMB definition, other demographic surveys may capture this as a race category. This results in the inaccurate categorization of race and ethnicity data and can result in difficulties when Hispanic or Latino data are reconciled with other relevant public health or health data sets. Given that race and ethnicity data collection is not mandated, significant amounts of Hispanic/Latino ethnicity data fields are missing.¹¹ Additionally, ethnicity data are not accurately categorized or reconciled, often resulting in the Latinx community being undercounted or miscategorized. Lastly, the lack of culturally responsive data collection has raised concerns about confidentiality and its impact on the accuracy of the data collected.¹²

Data Issue 2: Lack of Timely Data Reporting for Decision-Makers

Gaps in the quality of race and ethnicity data reporting raised an alarm for data collection and surveillance agencies around the country. The data inform priorities made by decision-makers around public health, economics, funding allocation, and education. The American Medical Association (AMA) and the Latinx Task Force urged the government to prioritize efforts to collect and report on race and ethnicity related to COVID-19 testing, hospitalization, mortality,¹³ and vaccinations.¹⁴ Furthermore, in an effort to accurately visualize Latinx data, the AMA compiled the COVID-19 Health Equity data collection mapping tool and a compendium of resources to draw attention to complexities associated with data inequities.¹⁵ Ethnicity data need to be reported quickly and accurately to public health officials and communicated effectively to communities and leaders. There is existing synergy¹⁶ to improve the COVID-19 data issues around race and ethnicity data quality and reporting, but Latinx considerations need to be integrated as part of these ongoing efforts.

Data Issue 3: Lack of Data Standardization for Race and Ethnicity

Scholars and community members have pointed out the lack of consistency and standardization in data reporting when defining pan-ethnic identities and Latinx communities.¹⁷ Identity categorization is complicated for this population given that there are long-standing debates about the terminology. Furthermore, more recently, in several national polls, the majority of survey respondents did not indicate a preference between the pan-ethnic terms.^18–21 Nevertheless, each of these terms has its own distinctions, and the official use of any of these terms has implications for purposes of diversity, equity, and inclusion related to data standardization (online Table A). This example demonstrates how the current national data standards still lack a true understanding of, and hence representation of, the Latinx communities in the United States.

Another missing data collection element is the lack of specificity of subethnic Latinx categories in the United States, such as “country of origin” or “ancestry.” It is important to include this in data collection to appropriately showcase the diverse identities, cultures, needs, and health gaps that shape Latinx communities in different parts of the country.¹² The Health Access for Communities in Emergency Response (HACER) document calls for a plan to standardize these data and ensure that they are regularly collected.

Emergence of the Latinx Task Force

The gaps and inequities faced by the Latinx community during the pandemic amplified the urgency for concerted efforts. Because there were limited, synergistic efforts supporting Latinx communities around the country,²⁰ the Latinx Task Force (hereafter, “Task Force”) developed at a critical time (https://latinxtaskforce.org/partners/network). The Task Force brought together public health, community organizations and leaders, and community health workers and promotores from the Latinx community to discuss health and data gaps in their communities and, more importantly, solutions to fill these gaps. This effort culminated with the launch of the HACER Campaign in October 2020 during Latinx Heritage Month.

Overview of HACER Campaign

HACER primarily focused on the gaps in data collection, reporting, and representation of the Latinx community. The Task Force launched HACER with the release of a national statement to raise awareness of Latinx health inequities and data gaps (https://latinxtaskforce.org/hacer-campaign/statement). This campaign soon evolved into a larger initiative in which members prioritized issues related to policy and funding (Figure A, available as a supplement to the online version of this article at http://www.ajph.org). Ultimately, the Task Force, along with local, state, and national partners, identified community needs, solutions, and recommendations (Table 1). One noteworthy long-term multisectoral solution emerged around building a more comprehensive, culturally and linguistically responsive public health infrastructure inclusive of Spanish-speaking surveyors, forms, and leaders to ensure representation in data collection and reporting.

Best Practices and Lessons Learned

The main goal of HACER is to raise awareness of the data gaps and inequities that directly affect Latinx communities nationally. In the following sections, the best practices and lessons learned that can inform the next steps are presented.

Partnership and Collaboration

Best practice

Forming an intentional understanding of the needs, perspectives, and roles that every partner has in a collaborative effort of this capacity helped embed a holistic lens in the vision behind developing and launching the campaign. The Task Force made an explicit effort to invite every partner to submit suggestions, edits, and recommendations across every step of this effort. Additionally, by being intentional about language, diversity, and race and ethnicity when describing the Latinx community, we were able to integrate this holistic and diversity, equity, and inclusion lens for the data infrastructure initiative. HACER initially garnished volunteer-driven contributions and endorsements from over 75 national, state, and local Latinx-focused partners. This network has grown to over 250 partners.

Lesson learned

Inclusive and transparent planning processes for transforming public health data systems, with input from communities, require extensive expertise and resources, including staffing, time, and communication. These efforts require coordination and resources from federal and national sources to maximize impact and ensure strategic uptake among key public health and health surveillance systems.

Awareness, Monitoring, and Evaluation

Best practice

A campaign needs considerable time and resources to raise awareness and increase reach. The Task Force has been invited to present to federal, state, and local agencies at over 12 meetings to garner support. Additionally, over 1000 organizations and leaders have learned about HACER and the recommendations through national events and townhalls.

Lessons learned

To ensure that widespread support leads to action, there is a need to embed monitoring and evaluation efforts to strengthen accountability. Priorities for the next iteration of the campaign, HACER 2.0, include a tailored call to action for Task Force members and community decision-makers and a visual map that shows the breadth of collaboration across the country.

Storytelling and Data Visualizations

Best practice

Transformative efforts like the Satcher Health Leadership Institute’s Health Equity Tracker (https://satcherinstitute.org/research/health-equity-tracker-project), which highlight how structural racism not only harms health but also shapes our data systems, have recently been launched, but there remains a distinct lack of data accessibility and transferability of insights to marginalized and minoritized communities.

Lessons learned

Public health maps and surveillance reports often remain inaccessible to the Latinx community. Key examples of how data are cocreated and translated into accessible communications using dashboards or story maps are sorely needed.

Conclusion and Call to Action

The COVID-19 pandemic brought to light many issues faced by our current public health systems in data collection, analysis, and reporting, but it also brought together new and nontraditional partners. The pandemic taught us that there is power in synergy and partnership. It is critical to amplify and value the voices and expertise of local community leaders to address data and other equity-based issues and to address the historical and present injustices Latinx communities face. The Latinx Task Force continues to center the needs of families, communities, and partners in its work. This also must be done at the federal, state, local, and corporate level to ensure that communities receive holistic, culturally and linguistically appropriate efforts and attention to address these persistent inequities.

As the Task Force strives for health equity, we invite all public health and health leaders to visit latinxtaskforce.org to integrate the HACER recommendations to appropriately address these data gaps. HACER recommendations remain critical as we strengthen our community health and public health systems.