Why We Should Collect Race and Ethnicity Data in Health Care

It wasn’t long into the pandemic before people noticed—and researchers confirmed—that COVID-19 outcomes were disproportionately worse in certain communities. Since then, much study has been devoted to parsing the data to measure the effects of the virus on different populations and determine why and how the consequences could be so different across a variety of groups.

Indeed, cumulative data over time show persisting disparities in cases for Hispanic people and deaths for Black people (see Exhibit 1). The disparities become clearer when adjusted for age, which is important because risk of infection, hospitalization, and death varies by age, and age distribution differs by racial and ethnic group. In addition, disparities widened and narrowed over the course of the pandemic but were the most evident early on (see Exhibit 2). For example, as of November 30, 2020, Hispanic, Black, and American Indian and Alaska Native (AIAN) people were almost 3 times as likely to die from COVID-19 and about 4 times as likely to be hospitalized as White people.1

The findings are a stark reminder that racial and ethnic disparities in health care do exist. Like so many other aspects of health care, the pandemic prompted a new focus on existing truisms—like the value of home-based care. There is no doubt that the research will continue for years. And with good reason—answers to the important questions about this era will shape health care access, delivery, and policy into the future. 

Looking Ahead

In April, the Centers for Medicare and Medicaid Services (CMS) announced that health equity is the first pillar in its strategic plan. With the vision of attaining a system where “everyone has a fair and just opportunity to attain their optimal health…” the agency laid out a list of goals, including “ensuring CMS programs serve as a model and catalyst to advance health equity through our nation’s health care system, including with states, providers, plans, and other stakeholders.”2 CMS is just one in a constellation of public and private sector organizations responding to the pandemic with efforts to address health equity issues. Its bold policy pronouncement and pledge to embed health equity into its DNA where it will serve as “the lens through which we view all of our work” is another indicator that the nationwide focus on equitable access to health care will be with us for some time.

Since its founding, NHIF has endeavored to put forth standardized definitions for metrics essential to the industry. This work has been methodical with the intention of addressing the fundamentals. The Foundation now recognizes that it will be imperative for home and alternate site infusion providers to track the metrics necessary to report on industry performance in health equity. Indeed, one of CMS’s stated goals is to expand and standardize the collection and use of data, including on race, ethnicity, geography, and other factors.

For these reasons, the Foundation recently announced a new initiative to collect standardized data throughout its projects to evaluate equitable access to infusion treatments in alternate sites. NHIF has adopted the standard categories for race and ethnicity and urges all providers to include voluntary questions in their admissions process to capture this data. These definitions were developed by the Office of Management and Budget (OMB) and the U.S. Department of Health and Human Services (HHS) and introduced in 1997. The categories are listed in Exhibit 3, for a full description and examples, download Standard Definitions for Race and Ethnicity.

NHIF recognizes that individual providers use a variety of software systems and processes to collect data but also maintains that standardized definitions are a critical element in allowing providers to engage in industry-wide benchmarking and research activities. By adopting the nationally recognized “Race” and “Ethnicity” definitions, providers and the industry will be better prepared to make comparisons between the home infusion and other health care services and industries.

Please help us identify the extent to which our industry reaches a diverse population and as many patients as possible by collecting this information. Measuring our impact on health care delivery not only allows us to improve our reach, but it could also provide further evidence in our efforts to advocate for adequate reimbursement and other policies that would allow greater access to home and alternate site infusion services for all patients, so they can “attain their optimal health.”

Contributed by Ryan Garst, PharmD, MBA, IgCP, BCSCP, NHIA’s Senior Director of Clinical Services.
This article was originally published in the July/August 2022 issue of INFUSION magazine.


  1. Hill L and Artiga S. COVID-19 Cases and Deaths by Race/Ethnicity: Current Data and Changes Over Time. Kaiser Family Foundation. February 22, 2022. https://www.kff.org/coronavirus-covid-19/issue-brief/covid-19-cases-and-deaths-by-race-ethnicity-current-data-and-changes-over-time/
  2. Centers for Medicare and Medicaid Services. CMS Strategic Plan Pillar: Health Equity. April 2022. https://www.cms.gov/sites/default/files/2022-04/Health%20Equity%20Pillar%20Fact%20Sheet_1.pdf

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