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1 Definitions, Principles, and Concepts for Minority Health and Health Disparities Research

       Eliseo J. Pérez‐Stable1, Jennifer Alvidrez1, and Carl V. Hill2

       1 National Institute on Minority Health and Health Disparities, National Institutes of Health, Bethesda, MD, USA

       2 Office of Special Populations, National Institute on Aging, National Institutes of Health, Bethesda, MD, USA

1.1 Introduction

      In 1985, Department of Health and Human Services (DHHS) Secretary Margaret Heckler commissioned a report on minority health at the urging of African American health leaders. The Heckler Report on Black and minority health examined the health status of Americans by race/ethnicity and identified the gaps in disease rates, mortality, and other outcomes among Blacks compared to Whites [1]. The report provided a foundation for the scientific field of minority health research and legitimized a perspective that had been developing for several decades. At the time, the public health paradigm was to evaluate health differences in populations from a socioeconomic perspective and access to care on the assumption that these were the main drivers of health outcome differences. The Heckler Report introduced the notion at a national level that race and ethnicity may be an independent contributor to health outcomes, which merited scientific study and targeted intervention programs. In 1987, the DHHS Office of Minority Health was founded, led by Herb Nickens, MD.

In 1990, the Office of Minority Programs was founded at the National Institutes of Health (NIH) under DHHS Secretary Louis Sullivan, MD. In 1993 the name was changed to the Office of Minority Health Research. Through congressional legislation, this office was transformed in 2000 into the Center on Minority Health and Health Disparities, and in 2010 to the National Institute on Minority Health and Health Disparities (NIMHD). John Ruffin, PhD was the director from 1990 until his retirement in 2014.¹

In 1999, DHHS Deputy Secretary David Satcher, MD cited the unacceptability of demonstrated healthcare disparities by race in commenting on a study published in the New England Journal of Medicine, showing that Blacks were less likely to be referred for cardiac evaluation when presenting with classic chest pain symptoms compared to Whites [2]. Two years later, the Institute of Medicine (IOM) published the Unequal Care report summarizing a legacy of unequal healthcare and more adverse results for most leading causes of death and disability in the United States among African Americans compared to Whites [3]. Remarkably, little data were contained in this Report about the status of other race/ethnic groups in the United States. The IOM report broke down silos and provided the field with unifying principles about healthcare disparities. These events brought together scientific disciplines from population health, social science, and clinical care to focus on minority health and health disparities research.

      In the twenty‐first century, data collection and availability have dramatically improved. Scientific advances in understanding basic biological mechanisms have transformed our understanding of etiological pathways and potential interventions to improve minority health and reduce health disparities. The creation of a critical mass of interdisciplinary investigators has made possible further development of the science of minority health and health disparities. Collaboration among all health‐related disciplines will make it possible for the next generation of minority health and health disparities researchers to advance the science. In that spirit, NIMHD is producing this book as it celebrates its tenth anniversary as an NIH Institute to further advance the science and lay the foundation for future research.

1.2 NIMHD Mission

      NIMHD is charged with coordinating and leading the NIH's vision and programs on minority health and health disparities research by funding research to improve minority health and reduce health disparities. The topics are broad and include the epidemiology, etiology, prevention, and treatment for all diseases across the life course for all health disparity populations. Research that advances understanding and improvement of health and disease in minority racial/ethnic groups in the United States is a primary area of interest, requiring a basic understanding of race and ethnicity in the context of science. Research to understand the causes of health and healthcare disparities, leading to interventions to reduce these disparities, is NIMHD's mandate. The training and development of a diverse scientific workforce is also part of a broad NIH mandate embraced by NIMHD. NIMHD envisions an America in which all populations will have an equal opportunity to live long, healthy, and productive lives.

1.3 Definitions and Concepts of Minority Health and Health Disparities

      1.3.1 Racial/Ethnic Minority Populations

In 1997, the Office of Management and Budget (OMB) issued the Revisions to the Standards for the Classification of Federal Data on Race and Ethnicity.² These standards are used for federal data collection purposes in the decennial US census, national household surveys, many administrative forms, and in medical and clinical research. Race and ethnicity categories have been modified over the decades to reflect the evolving demography of the United States, although full understanding of the meaning of the constructs captured by these categories is lacking and the categories need ongoing refinement and study. Currently, the five categories for race are defined as: American Indian or Alaska Native, Asian, Black or African American, Native Hawaiian and Other Pacific Islander, and White. In addition, a multirace category was included for the first time in the 2000 census. There are two categories for ethnicity: “Hispanic or Latino” and “Not Hispanic or Latino” and the question of ethnicity is posed before the race categories. The 2020 census plans to ask about family background for all respondents and continue to collect information on nation or US territory of origin for Hispanics/Latinos, Other Pacific Islanders and Asians, as well as tribal affiliation for American Indians/Alaska Natives. We consider that standardization of race and ethnic categories is an essential component of minority health and health disparities research and recommend using the census nomenclature and definitions

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