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Improving Race and Ethnicity Data Collection: A First Step to Furthering Health Equity Through the State-Based Marketplaces

Abstract crowds of people with virtual reality street display
Authors
  • Dania Palanker

    Assistant Research Professor, Center on Health Insurance Reforms, Health Policy Institute, McCourt School of Public Policy, Georgetown University

  • Headshot of Jalisa Clark
    Jalisa Clark

    Research Fellow, Center on Health Insurance Reforms, Health Policy Institute, McCourt School of Public Policy, Georgetown University

  • Christine Monahan
    Christine Monahan

    Assistant Research Professor, Center on Health Insurance Reforms, Health Policy Institute, McCourt School of Public Policy, Georgetown University

Authors
  • Dania Palanker

    Assistant Research Professor, Center on Health Insurance Reforms, Health Policy Institute, McCourt School of Public Policy, Georgetown University

  • Headshot of Jalisa Clark
    Jalisa Clark

    Research Fellow, Center on Health Insurance Reforms, Health Policy Institute, McCourt School of Public Policy, Georgetown University

  • Christine Monahan
    Christine Monahan

    Assistant Research Professor, Center on Health Insurance Reforms, Health Policy Institute, McCourt School of Public Policy, Georgetown University

Toplines
  • State-based ACA marketplaces could play a role in advancing health equity; a first step is improving collection of enrollees’ race and ethnicity data

  • By changing their application process and working with insurers to fill gaps, state-based insurance marketplaces can improve their collection of information on race and ethnicity

The Affordable Care Act improved access to health insurance for people of color. But injustice and racism in health care, health coverage, and society limit opportunities for people of color to live as healthy lives as possible. Public officials are recognizing that marketplaces and participating insurers can help reduce health inequities. A first step is for marketplaces to improve data collection of enrollees’ race and ethnicity.

Marketplaces Are Failing to Capture Essential Data About Race and Ethnicity

Marketplaces and insurers can collect race and ethnicity data and combine them with claims, quality, or other data to reveal inequities. Data can be disaggregated by demographics and stratified by geography, diagnosis, or other variables to identify disparities and sometimes the causes thereof. For example, data could show that a lack of urgent care centers in predominantly Black communities drives residents to unnecessary emergency department visits. Over time, data disaggregated by race and ethnicity also can show whether equity-focused interventions are achieving their objectives.

Marketplace enrollment applications ask for race and ethnicity (i.e., Hispanic or non-Hispanic), but approaches vary across federal and state-based marketplaces and neither type of marketplace can require applicants to disclose this information. Race data are missing for 38 percent of federal marketplace enrollees who enrolled during the 2022 open-enrollment period; ethnicity data are absent for 29.6 percent. In state-based marketplaces, race or ethnicity data (reported as a single variable) are missing for 22.6 percent of enrollees. These gaps make it difficult to know if access to insurance coverage or to care is equitable.

This current knowledge gap is significant. Medicaid sets thresholds for determining how concerning gaps in race and ethnicity data are in terms of the data’s usability, reliability, and accuracy. Most state-based marketplace data qualify as highly concerning under this approach.

Bar chart: Percent of Enrollees with Missing Race or Ethnicity Data in State-Based Marketplaces During the 2022 Open-Enrollment Period Compared to Level of Concern for Impeding Analysis

State-Based Marketplaces Can Improve Race and Ethnicity Data Collection Through the Application Process

Enrollees may be reluctant to share personal information for many reasons, including fear of discrimination or because they may not identify with the options provided. Some enrollment assisters and brokers may deemphasize or skip the questions.

State-based marketplaces can address these challenges and increase response rates by changing the application process. New York’s marketplace made multiple changes to its 2022 application process and saw a 45 percent drop in the percentage of enrollees with missing race or ethnicity data. The new process:

  • includes an explanation of how the information will be used
  • adds new categories for race and new subcategories for applicants who identify as Hispanic, Latin(o/a/x), or of Spanish origin
  • makes responding to the questions mandatory, but adds options for “don’t know” and “choose not to answer”
  • educates enrollment assisters and brokers about the significance of asking these questions and provides a sample script.

Other state-based marketplaces are also implementing changes. For example, Massachusetts’ marketplace recently added a “choose not to answer” option and updated its explanation for why it is collecting these data. Washington reported an increase in “multirace” reporting after redesigning its website to improve user experience when selecting race(s). Both marketplaces intend to make further enhancements to their data collection efforts.

State-Based Marketplaces Can Work with Insurers to Collect Race and Ethnicity Data

State-based marketplaces also can enlist insurers to fill gaps. Insurers can collect race and ethnicity data during routine contacts (e.g., customer service calls, website account registration), targeted outreach, and from providers.

For example, the California marketplace requires insurers to collect self-reported race and ethnicity data for at least 80 percent of enrollees and share this information with the marketplace. Washington is raising its benchmark for the same data from 60 percent to 70 percent for 2023. The District of Columbia adopted recommendations that require the marketplace to share race and ethnicity data collected on applications with insurers and have insurers collect data postenrollment to fill in gaps. California and D.C. also will require that insurers achieve National Committee for Quality Assurance equity-related standards, which include data collection requirements.

Getting insurers to a place where they collect sufficient data takes time and effort. California required insurers to collect race and ethnicity data prior to the Affordable Care Act, but self-reported data were lagging until the marketplace created a specific goal for self-reported data and a three-year timeline for implementation.

Looking Forward

Improving data collection will help marketplaces target efforts to improve health equity. State-based marketplaces may be able to significantly improve race and ethnicity data collection during the next open-enrollment period by making changes to the application process, like New York has done. Some states may be hesitant to act, however, unless and until the federal government implements updated, uniform standards for collecting this information.

Insurers also can play an important role by collecting data postenrollment. Like the marketplaces, insurers will achieve the strongest results with clearly defined goals. Recent rule changes by the federal government put new pressure on insurers. Beginning in 2023, insurers participating in the risk-adjustment program must report available race and ethnicity data to the federal government. In 2025, insurers that do not have these data must make a good-faith effort to collect it.

There is a social impetus to improve health equity now. State policymakers can design marketplace-based strategies to target known health inequities at the same time they work to improve data collection, as long as they are prepared to adjust and assess those strategies as data are improved.

Publication Details

Date

Contact

Dania Palanker, Assistant Research Professor, Center on Health Insurance Reforms, Health Policy Institute, McCourt School of Public Policy, Georgetown University

Citation

Dania Palanker, Jalisa Clark, and Christine H. Monahan, “Improving Race and Ethnicity Data Collection: A First Step to Furthering Health Equity Through the State-Based Marketplaces,” To the Point (blog), Commonwealth Fund, June 9, 2022. https://doi.org/10.26099/8q55-7w85