Why This Matters

Despite decades of research on the persistence of racial and ethnic health care inequities, health equity efforts continue to be hampered by the lack of complete and comprehensive patient demographic data and a limited capacity to use these data to monitor racial and ethnic disparities in health care access, quality, and outcomes.

California has been a bellwether among US states in the effort to improve data collection and use to reduce racial and ethnic health inequities. Yet, the state faces challenges and unanswered questions regarding the most effective ways to collect, analyze, and share data. This study aimed to identify actionable strategies that leaders in state-based and national health equity efforts consider promising to advance patient demographic data collection and monitoring and improve reporting of racial and ethnic disparities.

The national environment has changed significantly since the research reported in this brief was launched and conducted. In the uncertainty of the current moment, our research documents the essential role that patient demographic data collection and monitoring play in accelerating progress toward health care equity.

Key Takeaways

• As demonstrated by several health systems in the state, demographic data can be applied in ways that drive quality improvement and better patient outcomes.
• California and its health equity partners could consider or ramp up untapped opportunities, such as working with the business sector where interests align.
• Communities affected by health inequities possess deep expertise regarding solutions, but are a relatively untapped resource.

We present the following recommendations based on our interviews and literature review, including prior Urban findings. Audiences for these actions include philanthropists, policymakers and state regulators, advocates, researchers, clinicians, and health systems administrators, both within California and nationwide. A table with all recommendations is available in the brief.

Consumer Advocates

• Find ways to engage with the private sector regarding questions related to demographic data collection and use, especially their reluctance to use disaggregated data because of concerns about data privacy, data quality and accuracy, and correct data interpretation.
• Gather consumer feedback on outreach methodology and data collection wording that would be most encouraging to collect demographic data from patients.

Clinicians and Health Systems Administrators

• Take a broad view of clinical data collection that includes demographic data, enrollment data/eligibility information, social determinants of health and clinical indicators, and information about past utilization.
• Embrace the need for standardized data, definitions, and terminology—while understanding that a tension exists between data standardization and pressure for more granular, self-defined race and ethnicity categories.
• Account for the administrative burden associated with standardized data by developing the staff capacity needed to accomplish this work.

Health Services Researchers

• Show how data can be used to tie equity to quality performance indicators.
• Develop evidence-based models for data transparency and shared equity metrics to improve accountability while avoiding the risks of “cherry-picking” patient populations.

Philanthropists

• Invest in local organizations that promote data use to advance community engagement and data ownership at the community level.
• Support capacity building among small practices that will increase their ability to collect and use demographic data.

Policymakers and State Regulators

• Understand that limited authority hampers state offices’ ability to regulate health systems and plans based on equity performance metrics.
• Consider whether funding can be tied to both identifying inequities and addressing institutional drivers of equity.

Employers/Plan Purchasers

• Encourage employees to complete demographic data forms during annual plan renewal and update and refresh commercial plan data.

How We Did It

Our findings are based on a literature scan and 31 semistructured interviews with key stakeholders and subject matter experts in California.