17 Tips to Improve Race & Ethnicity Data

January 25, 2022 · Andy Reynolds

A new report on how federal agencies can improve collection and use of race and ethnicity data helps advance health equity in two ways:

• Describing barriers to collecting data on race and ethnicity.
• Identifying practical ways to overcome those obstacles.

Improving Data on Race and Ethnicity: A Roadmap to Measure and Advance Health Equity is the final result of an 8-month collaboration between NCQA and Grantmakers in Health (GIH), and funded by the Commonwealth Fund.

The report focuses on four themes that emerged from extensive interviews with more than 20 experts:

• Federal Leadership: The federal government can provide a unified vision and encourage consistency in how states and health care organizations collect race and ethnicity data.
• Innovation Networks: Understanding how and why new ideas spread can help identify organizations that do a good job collecting race and ethnicity data. This also helps other organizations know which leaders to emulate.
• Flexible Incentives: Incentives should balance requiring organizations to capture core data in standardized ways, while letting them collect data in ways that reflect local needs and populations.
• Patient/Community Involvement: Leaders who are serious about improving collection of race and ethnicity data need to work closely with patient and community groups. The mantra, “Nothing about me, without me” applies.

Needs & Recommendations

Health equity is central to health and health care. Yet health plans and health care delivery systems often lack basic information on people’s race and ethnicity. This makes assessing and improving health harder than it already is.

Race and ethnicity data are available for nearly all Medicare beneficiaries. But less than 25% of commercial health plans have race data for even 50% of their members. As expectations for stratifying quality results by race and ethnicity increase, having these data becomes a business—not to mention ethical—necessity.

At the heart of the report are 17 (!!) recommendations focused on four areas:

• Regulation: Understanding which federal and state policies create real or perceived barriers to data collection is key to improving those data. The report specifies four strategies to do that.
• Changes in Data Standards and Systems: Six recommendations detail how the federal government and standards-setting groups should modernize data collection, analysis and reporting.
• Incentives and Requirements: The report outlines three ways government can use “carrots and sticks” to improve data completeness.
• Education and Technical Assistance: Four suggestions are about clarifying what is allowed in data collection and alerting organizations to technical resources that can help them.

Race and Ethnicity Data: Actionable Ideas

“Our recommendations are more specific than you typically see,” said NCQA Research Scientist Phil Saynisch, who worked on the report. “We wanted to put some meat on the bones and do more than lay out broad principles. That’s why our suggestions get to the level of, ‘Change the application forms for Medicare Advantage.’ We’re helping specific people or agencies know particular actions they can take.”

The report’s detail is a big reason for the enthusiastic response it has received.

“Feedback we’ve gotten has emphasized the report’s concreteness and specificity. People like that we made it actionable,” said Phil. The report has short-term and long-term recommendations for federal and state governments, as well as private-sector health insurance and delivery systems.

NCQA and GIH staff were honored to brief executive branch officials on the recommendations.

We have also been heartened to see leaders we respect praise the report in social media. One called it “mandatory reading if you’re serious about measuring and improving equity of health care and health outcomes.”

What’s Next

Understanding whether your organization is providing equitable care requires complete, accurate data on race and ethnicity.

 Use our report to:

• Take stock of your own data and collection practices.
• Assess what prevents you from collecting data or using it effectively.
• See if our recommendations can help you plan a way forward. If not, contact us so we can we help provide solutions.

We hope health plans and delivery systems will consider our recommendations for communicating with patients about the need to collect race and ethnicity information. Effectively explaining why you’re asking about a patient’s race and ethnicity—and how you’ll use the information—can improve trust.

For our part, we plan to keep speaking with policymakers, health plans and delivery systems about putting the report’s ideas into practice.