Filling Gaps in Race, Ethnicity Data Critical for Health Equity

Filling gaps in race and ethnicity data will help support and promote health equity, according to a commentary written by Anne-Marie J. Audet, MD, senior medical officer at United Hospital Fund (UHF).

With the emergence of COVID-19, existing racial and ethnic disparities in healthcare have been exacerbated. Audet noted that as of November 10, 2020, the age-adjusted mortality from COVID-19 among black Americans as three times higher than that of white Americans.

She stated that if mortality rates had been the same across races, about 21,200 black, 10,000 Latino, 1,000 Indigenous, and 70 Pacific Islander Americans would still be alive.

These glaring disparities have also highlighted longstanding data challenges in healthcare. These challenges pose substantial barriers to assessing healthcare quality and addressing health inequities.

“What we choose to measure (or not to measure) has significant implications on the story we can tell about the health of communities,” Audet wrote.

“This moment forces us to ask several crucial questions: Are current quality measures up to the task? Do they provide an accurate, non-biased picture of the effect of our healthcare system on people’s lives? Do they allow us to assess the six domains of quality? Especially, do they enable us to fully evaluate equity and identify where and why inequities exist in health and healthcare?” 

Among the challenges that persist are gaps in data collection, risk-adjustment complexities, continued reliance on process over outcome measures, limited use of standardized measures, and inadequacies in quality measures.

These challenges have only become starker in light of the current pandemic. While population-level data about COVID-19 infections were reported to the CDC from 1,802,416 people, Audet noted that data on race and ethnicity were available for only 866,693 people (48.1 percent). Additionally, data on emergency department visits did not include information about race.

Gaps in race and ethnicity information exist in claims data as well. Audet reported that in 2015, one third of commercial plans, half of Medicaid plans, and almost three quarters of Medicare plans reported incomplete or partially complete claims documentation of race and ethnicity.

As claims are a principal source of health data, this information is particularly concerning.

“These gaps are troubling—claims remain the predominant source of healthcare data,” Audet stated.

“At the peak of the pandemic, claims-based utilization data showed a significant drop in ED visits. The number of patients presenting with strokes, heart attacks, or other urgent health problems had plummeted. What might be the implications of forgoing needed care? Our understanding of this phenomenon is still evolving. Race and ethnicity data will be essential to get answers and to address the contributing factors accordingly.”

EHR data also contains gaps in critical patient information, Audet said. In a recent analysis of outcomes of patients who tested positive for COVID-19, race and ethnicity data were available for only 40 percent of the 16,957 people who tested positive for the virus.

To respond to gaps in health data, government agencies have developed new standards and methods of data collection. The Office of Management and Budget and the Office of Minority Health at the US Department of Health and Human Services recently defined standards for gathering race and ethnicity data, Audet said.

The CDC also established new data processes in May 2020, helping states provide more comprehensive information on race and ethnicity for reported COVID-positive cases.

“Since then, the proportion of reported cases that include race and ethnicity data has increased and provides a better picture of COVID trends and the disparate impact at the population level,” Audet wrote.

While standards and regulations are critical initial steps, the industry needs to do more to bridge gaps in data. Leaders must take a systemic approach to improve health data and achieve health equity, Audet said.

“The first step is to set measurable equity goals at all levels of the health system. These goals would encompass national and state policies, more equitable distribution of health care resources locally, and the provision of care to individuals. We also need an accountability mechanism to assess progress, and various incentive levers to motivate action toward goals,” she stated.

Ultimately, collecting health data in a way that promotes and supports health equity will require leaders to prioritize data integrity, and to understand the mistrust and fear patients may have about how race and ethnicity information will be used.

“To advance a vision of health equity, transparent, reliable, and publicly reported information must inform community engagement and strategy development. Only trusted data can engage stakeholders around the evidence of health inequities and guide corrective and collective actions,” Audet concluded.

“The tragic toll of COVID-19 is proof that, when it comes to information we can trust, the stakes could not be higher. Such information is critical to rectifying the racial injustice built into all US institutions, including our health system. To move forward, we must persevere to bridge the information gaps.”