Chrystine Zacherau and Abby Knapp
National Minority Health Month provides a timely reminder for public health and industry leaders to reflect on strategies for reducing disparities and improving the health outcomes of marginalized communities. There is a clear consensus that access to care, income and wealth gaps, education, environmental factors and social and community context (including racism and discrimination) influence health disparities across populations. Quantitative and qualitative data increasingly help us understand these disparities and track them over time. As we do so, it’s critical to recognize that the ways we collect, analyze, present and disseminate data have important implications for health equity.
The Biden Administration has firmly emphasized the critical role of data in uncovering and addressing our most pressing health care challenges. In fact, President Biden signed an executive order aimed at promoting racial equity and bolstering support for marginalized communities. As part of this directive, the Biden-Harris Administration tasked the Interagency Working Group on Equitable Data with the responsibility of enhancing the collection, analysis and application of demographic data to drive equity initiatives.
In addition, many public health organizations are advocating for data equity. “Data is the oxygen that powers our ability to detect and respond to threats to health and we are at a pivotal moment in the modernization of the public health data infrastructure,” said Centers for Disease Control and Prevention (CDC) Director Dr. Mandy Cohen in a recent press release.
Equitable data has been impeded by limited access to technology, language barriers and historical distrust among marginalized communities toward collection efforts due to mistreatment by public health and medical professionals. As a report from the National Committee for Quality Assurance and Grantmakers in Health shows, the COVID-19 pandemic underscored the urgent need for systemic reforms in public health data management, highlighting issues such as missing or unstandardized data. Detailed, disaggregated data for American Indian and Alaska Native, Middle Eastern and North African, and Asian American and Pacific Islander communities is often lacking, which can obscure underlying health disparities among subgroups.
To address such issues, a 2023 report from the National Minority Quality Forum and BlueCross BlueShield Association shows that achieving data equity demands sustained, collaborative and intentional efforts. There is no single sector that possesses the capacity to effectively address systemic disparities in health care, the report says. The absence of national standards for data collection, sharing and protection poses a significant obstacle to building a robust national data ecosystem, exacerbated by disparities in state-level data prioritization.
Similarly, the organization Actionable Intelligence for Social Policy recognizes centering equity is not a one-time action. Equity should be at the forefront of every stage of the data life cycle — including planning, collection, data access, algorithm usage, data analysis and data reporting. By fostering collaboration among health care leaders, social service agencies and community-based organizations, we can collectively tackle the challenges of achieving data equity.
Here at Reservoir, we collaborate with leaders in data equity who are making substantial progress in tackling these challenges. Our clients are actively advocating for the incorporation of data equity principles into their operations, forging partnerships with researchers, funders and community leaders — because if we don't actively ensure that inclusive data practices are widely adopted, the gaps in health outcomes between different groups of people will remain.