The Evolution of Health Disparities Policy and Research

As we celebrate National Minority Health and Health Disparities month, it is important to reflect on the events that shaped the movement and the potential for new initiatives to influence serious change. While significant progress has been made in some areas; in others, it has remained stagnant.

FROM NEGRO HEALTH WEEK TO HEALTH DISPARITIES

Efforts to address health disparities can be traced to the early 1900s, stemming from research by African-American scientist, W. E. B. Du Bois. His research indicated that higher mortality in African-Americans was due to their poor social and environmental conditions, rather than the prevailing myth of racial inferiority.1 

The Negro Health Improvement Week in 1915 was among the first federal activities focused on the public health needs of African Americans. In 1980, the Office of Research on Minority Health was created and in 1985, a report was published showing glaring disparities in the health and mortality of the nation’s minority groups compared to Whites. Following this, the Office of Minority Health was created in 1988. The Minority Health and Health Disparities Research and Education Act of 2000 (42 U.S.C. 202) mandated renewed efforts to address health disparities, health care access, collection of race/ethnicity data, and training health professionals on cultural competence. 

THE NEW MINORITIES

Growth in population diversity has called for the health disparities agenda to include multiple racial/ethnic groups such as American Indian and/or Alaska Native, Pacific Islander, Asian, and Hispanic/Latino populations. Recently, there has been an increased focus on the need for data and research on other minority groups, including people with disabilities and the LGBT population. 

Persons with disabilities experience disproportionate disparities and are four times more likely to have cardiovascular disease, 50% more likely to be a victim of a violent crime, and three times more likely to be among new cases of diabetes.2 In 2011, the Secretary of Health and Human Services (HHS) announced standards for federal data collection that included disability questions. The long overdue disability questions identify limitations in vision, hearing, mobility, memory, and activities of daily living. 

Data collection and monitoring on LGBT populations has been voluntary for many years. Accurate and complete data is needed to understand health trends and priorities in this community. LGBT youth have a suicide rate double that of heterosexual youth, and face greater housing discrimination, disproportionate HIV/AIDS rates and experience greater violence.3  Several years ago, HHS developed a plan to field-test new methods for collecting unbiased, reliable sexual orientation and gender identification questions to integrate into national surveys. 

AFFORDABLE CARE ACT AND HEALTH DISPARITIES

A number of provisions within the Affordable Care Act (ACA) support health disparity reduction.

• Elevation of Health Disparities Centers. Section 10334 moved the Office of Minority Health in HHS to the Office of the Secretary. The National Center on Minority Health and Health Disparities was re-established as an institute, allowing it to set priorities and evaluate health disparities research. Six Offices of Minority Health were also established at individual agencies within HHS.
• Data Collection. Section 4302 requires that population surveys and federally funded health and health care programs collect, report, and monitor data on race, ethnicity, sex, primary language, disability status, and those living in rural areas. 
• National Strategy for Quality Improvement. A national blueprint is being developed to improve the delivery of health care services, patient outcomes, and reduce health disparities. 
• Centers of Excellence. Sections 5401 and 5402 increase funding to the Health Resources and Services Administration’s Centers of Excellence for health disparities research. 
• Patient-Centered Outcomes Research Institute. Section 6301 created the Patient-Centered Outcomes Research Institute to conduct community-engaged and comparative effectiveness research on health care service outcomes for minorities.
• Health Care Workforce and Cultural Competence. Multiple sections seek to increase the diversity within the primary, dental, mental health, and long-term care workforce, as well as the collection of workforce diversity data. The National Health Service Corps has tripled, providing scholarships. Over 50% of recipients are minorities.
• Federally Qualified Community Health Centers. $11 billion has been designated to double the number of patients in community clinics by 2019, which are primarily poor, uninsured, and racial/ethnically diverse. 

FUTURE OF HEALTH DISPARITIES

The Civil Rights Act of 1964 fueled major advocacy efforts for equal treatment of all Americans. Yet, minority patients still experience discrimination in the health care system, often due to health care providers’ implicit biases. For instance, African-Americans are 78% less likely to receive certain revascularization after angiography, and are likely to wait twice as long for a kidney transplant than White patients. 4, 5 

In fact, few disparities have been eliminated in recent years. Quality and outcomes by income and race showed no substantial improvements.6 Disparities related to hospice care and chronic disease management grew larger and while the overall uninsurance rate dropped, racial/ethnic disparities remained. Further, impoverished households fared worse in access to care. There was some good news—elimination of disparities in childhood immunizations rates was achieved.

Efforts to diversify the healthcare and research workforces through grants to recruit, train, retain, and advance diverse scientists continue to lag. Intervention is needed along the pipeline, from early education, graduate school, and into the tenure-track. In 2014, The National Institutes of Health (NIH) added the Diversity of the NIH-Funded Workforce to bolster gender and racial/ethnic diversity.

Overall, these findings suggest that progress has been modest at best, and that eliminating health disparities requires more aggressive legislation, which must come from public advocacy. ACA provisions and growing awareness have led to concerted efforts, breathing some life into an ambitious agenda. However, advocates will need to persist to win the battle against unyielding and often unfavorable social determinants. 

(1)  Thomas, Stephen B. and Benjamin, Georges C. and Almario, Donna and Lathan, Monica J. (2006) Historical and Current Policy Efforts to Eliminate Racial and Ethnic Health Disparities in the US. Future Opportunities for Public Health Education Research. Health Promotion Practice, 7 (3). pp. 324-330.

(2) Krahn, Gloria, Klein Walker, Deborah, Correa de-Araujo, Rosaly (April 7, 2015). Persons with Disabilities as an Unrecognized Health Disparity Population. Webinar sponsored by The Interagency Committee on Health and Health Disparities of the Interagency Committee for Disability Research.

(3) Healthy People 2020 data. Topic area: Lesbian, Gay, Bisexual, and Transgender Health.

(4) Ayanian JZ, Udvarhelyi IS, Gatsonis CA Pashos CL, Epstein AM. Racial differences in the use of revascularization procedures after coronary angiography. JAMA. 1993; 269: 2642-2646.

(5) Young, CJ, Gaston RS. Renal transplantation in black Americans. N Engl J Med. 2000 343: 1545-1552.

(6) 2014 National Healthcare Quality and Disparities Report. Rockville, MD: Agency for Healthcare Research and Quality; April 2015. AHRQ Pub. No. 15-0007.

Dr. Herrera-Venson is a gerontologist specializing in aging and health policy. See her bio for more information