Diversity, Equity, and Inclusion in Public Health Data Modernization

February 07, 2024 | Reema Mistry, Jamie Pina, J.T. Lane

Diverse groups of young people studying on laptops around several tables, on person in a wheelchair

Collecting, documenting, and sharing representative data is core to effective public health action, as it informs policymaking and guides interventions and resource distribution. However, as the COVID-19 response demonstrated, national data collection was not representative and highlighted gaps—especially in race and ethnicity data. Yet, achieving equitable representation in public health data collection is possible and will require consistent effort and advocacy to address underlying and systemic challenges facing public health practitioners.

The COVID-19 pandemic created tremendous strain on the information systems used by public health and health care practitioners alike in the United States. In its wake, several opportunities for improvements to the national data infrastructure have surfaced. There are currently several federal initiatives aiming to achieve these improvements. “Public Health Data modernization” is the term used to describe this national effort that will be executed by government public health agencies over the next several years.

Data modernization can improve the public health response to emerging health threats in the United States by allowing more comprehensive and accurate data collection across diverse populations.

Social determinants of health (SDOH)—such as sexual orientation and gender identity (SOGI), and race, ethnicity and language (REaL)—have profound effects on an individual’s health. During the COVID-19 pandemic, the LGBTQIA+ communities and racial/ethnic minorities experienced a disproportionate burden of cases and deaths. Although documenting SOGI and REaL data in electronic health records (EHRs) is consistent with federal efforts, our public health data systems either do not capture the data consistently or are unable to share it across jurisdictions with ease.

It is important for clinicians to have access to complete and accurate information so that they can provide relevant therapeutic and preventive services, and for researchers, policymakers, and public health professionals to better identify disparities and barriers to care. Health Level Seven International (HL7), an international standards body for data interoperability, does not have SOGI standards, resulting in inconsistent and incomplete data documentation. As a result, there is no clear picture of how the COVID-19 pandemic truly impacted the LGBTQIA+ community.

It is important to continue to assess health impacts by SDOH and its intersectionality because seldom is health influenced by a singular social factor. Building data infrastructure that includes all social identities, allowing for standardized documentation and interoperable data while protecting patient privacy is crucial and requires tremendous effort and coordination across federal and state public health agencies.

Recent studies indicate overall unmet informatics workforce needs at both state and local health departments. Public health informatics specialists reportedly have less experience in public health, lower salaries, and fewer leadership roles. Based on a 2017 survey of 187 state and local public health employees, the public health informatics workforce was made up of 67.2% White, 23% Hispanic or Latino, 18% Black or African Americans, 15% Asians. American Indian or Alaska Native and Native Hawaiian or Pacific Islander represented 0% of the workforce. Having a workforce that is highly skilled, diverse and representative of the population we serve improves access to care, helps build culturally relevant care, contributes to more equitable public health activities and is essential in achieving diversity, equity and inclusion (DEI). ONC’s Public Health Informatics & Technology Workforce Development Program (PHIT Workforce Program) exemplifies how we can build a stronger workforce by bolstering historically Black colleges and universities, Hispanic-serving institutions, and Asian American and Native American Pacific Islander-serving institutions.

COVID-19 vaccine data collection highlights the challenges and hope in achieving representative data collection. When COVID-19 vaccination began, the race and ethnicity of vaccinated individuals was just over 51% in January 2021. As of November 2022, race and ethnicity of vaccinated individuals stood at 75%. An improvement, but more work remains.

The COVID-19 pandemic demonstrated the importance of using public health datasets to plan for vaccination rollout and managing overburdened hospital systems. While CDC’s COVID-19 Data Tracker and the National Program of Cancer Registries (NPCR) includes data for all U.S. Island jurisdictions, most of the approximately other 32 public health datasets exclude data for the U.S. Islands such as Puerto Rico (PR), U.S. Virgin Islands (USVI), Guam, Commonwealth of the Northern Mariana Islands (CNMI), American Samoa, Palau, Republic of the Marshall Islands (RMI), and Federated States of Micronesia (FSM) despite having some of the most challenging population health outcomes. The reasons for excluding island jurisdictions from public health datasets vary, but the lack of inclusion is a significant health equity issue with repercussions for island health outcomes and requires creative data modernization solutions.

While improving data collection practices, diversifying the public health informatics workforce, and increasing representation in vaccination records are essential to achieving better outcomes during future health crises, further work is needed to reduce the intrinsic biases present in modern-day public health practice. A critical role that can be fulfilled by participants in ASTHO’s DELPH program is preparing and equipping a new generation of public health leaders to better advocate for a diverse public health workforce and improve equity across all domains public health data collection and use.

With representative data providing complete visibility of how public health threats are impacting all types of communities across the nation and at the neighborhood level, public health practitioners can turn data into the very tools they need to ensure everyone has access to better health in all neighborhoods in all 50 states, Washington, D.C., five U.S. territories, and three freely associated states.