• New research highlights the role of high-quality data on race and ethnicity as a critical tool in reducing health disparities, but data availability problems can limit this potential.
• Solutions include clarifying the value of such data, building consumer trust, strengthening community engagement, reducing actual and perceived legal concerns, and modernizing data collection practices.

Inconsistent and incomplete data about health plan enrollees’ races and ethnicities makes it difficult to track and evaluate efforts to reduce health inequities, according to new research conducted by the Urban Institute, the American Benefits Council and Deloitte’s Health Equity Institute, and funded by Elevance Health.

The report, “Collection of Race and Ethnicity Data for Use by Health Plans to Advance Health Equity,” finds that improved collection of race and ethnicity data for use by health insurers, and others, can help identify and address inequities in health care.

Perspectives from various health care stakeholders -- including commercial health insurance plans, health care providers, employers, community-based organizations, foundations, and research organizations -- offer several potential actions to improve the availability of high-quality race and ethnicity data:

• Developing a collective understanding of the value of improving the quality and availability of race and ethnicity data.
• Including community engagement and trusted community partners in efforts to improve data collection.
• Providing transparency about the reasons for collecting data, as well as creating and sharing guardrails to ensure data security and patient privacy while preventing harm to historically marginalized people and communities.
• Addressing concerns about the legality and permissibility of data collection and sharing among employers and others, through clarifying language from the federal government.
• Contributing to and enhancing current efforts by federal leadership to develop more inclusive standards for self-reported and voluntary identification of individuals’ race and ethnicity.
• Investing in updated data collection standards, interoperable data systems, and robust training on data collection for frontline health workers.

“Health plans play a critical role in reducing health disparities, yet we sometimes lack complete data to support a whole health approach, which is why we funded this work,” said Shantanu Agrawal, M.D., Chief Health Officer at Elevance Health. “The insights and recommendations in this report underscore the importance of transparency and partnership as we work to improve our collection and use of race/ethnicity data to advance health equity.”

“Employers are the source of health coverage for most Americans and are committed to ensuring high-quality care for their workforces and the communities in which they live. This include addressing disparities in care,” said American Benefits Council President James A. Klein. “The recommendations set forth in this report present a roadmap to address barriers that hinder health equity.”

“The COVID-19 pandemic has exacerbated health inequities in communities of color and increased the urgency for both more complete self-reported race and ethnicity data, and better data collection processes,” said Jennifer Haley, senior research associate at the Urban Institute. “Having more complete data increases the likelihood that people in these communities will receive care that is tailored to their needs, leading to more positive health outcomes. At the same time, guardrails are needed to protect patient privacy and security and to ensure that marginalized groups of people are not discriminated against or harmed by the health care system.”

A related survey separately conducted by Deloitte’s Health Equity Institute found that most people are comfortable sharing their race and ethnicity data with their health insurance carrier, but nearly 60 percent of respondents were concerned that the data would be sold or shared with third parties without their consent. More information on the survey can be found here.

“We can’t improve what we don’t measure,” said Jay Bhatt, D.O., executive director of the Deloitte Center for Health Solutions and the Deloitte Health Equity Institute. “Continuing to analyze the delivery of care and examine patient outcomes across demographics, including race and ethnicity but also sexual orientation, gender identities, and language is critical to administering more equitable and inclusive care, and building trust with communities across America.”

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