Distrust, Race and Research: Beyond the Legacy of Tuskegee Stephen B. Thomas, Ph.D. Professor Health Services Administration School of Public Health Director, Maryland Center for Health Equity University of Maryland College Park, MD November 20, 2013 HealthCare Plexus Webinar twitter: #plexus-tuskegee

National Institute of Minority Health and Health Disparities and Office of the Director, National Institutes of Health American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas SCHOOL OF PUBLIC HEALTH  CENTER FOR HEALTH EQUITY NIH-NIMHD Center of Excellence on Race, Ethnicity and Disparities Research Architects of Community Engaged Research Drs. Craig S. Fryer, Mary A. Garza, Stephen B. Thomas, Sandra C. Quinn and James Butler, III

buildingtrust.umd.org

National Institute on Minority Health and Health Disparities and Office of the Director, National Institutes of Health American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas BETWEEN MINORITIES AND RESEARCHERS 1. The Historical Context 2. The Challenge 3. The Framework 4. The Opportunity Agenda

National Institute on Minority Health and Health Disparities and Office of the Director, National Institutes of Health American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas BETWEEN MINORITIES AND RESEARCHERS HISTORICAL CONTEXT Photo Credit: Sandra Quinn

National Institute of Minority Health and Health Disparities and Office of the Director, National Institutes of Health American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas SCHOOL OF PUBLIC HEALTH  CENTER FOR HEALTH EQUITY THE CHALLENGE Photo Credit: Sandra Quinn

National Institute of Minority Health and Health Disparities and Office of the Director, National Institutes of Health American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas SCHOOL OF PUBLIC HEALTH  CENTER FOR HEALTH EQUITY

“…The people who ran the study at Tuskegee diminished the stature of man by abandoning the most basic ethical precepts. They forgot their pledge to heal and repair. They had the power to heal the survivors and all the others and they did not. Today, all we can do is apologize.…” President William Jefferson Clinton The White House May 16,

National Institute of Minority Health and Health Disparities and Office of the Director, National Institutes of Health American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas SCHOOL OF PUBLIC HEALTH  CENTER FOR HEALTH EQUITY Source: Thomas, S. (2000). The Legacy of Tuskegee AIDS and African Americans. The Body Positive: The Complete HIV/AIDS Resource

National Institute of Minority Health and Health Disparities and Office of the Director, National Institutes of Health American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas SCHOOL OF PUBLIC HEALTH  CENTER FOR HEALTH EQUITY Source: Sandra C. Quinn and Stephen B. Thomas (2000). Presidential Apology for the Study at Tuskegee. Encyclopedia Britannica:

THE OFFICIAL NAME AFTER THE 1997 PRESIDENTIAL APOLOGY “The U.S. Public Health Service Study Done at Tuskegee ( ) ”

Bioethics Principle of Justice “…Who ought to receive the benefits of research and bear its burdens? This is a question of justice, in the sense of "fairness in distribution" or "what is deserved.” An injustice occurs when some benefit to which a person is entitled is denied without good reason or when some burden is imposed unduly….” The Belmont Report, April 18, 1979

National Institute on Minority Health and Health Disparities and Office of the Director, National Institutes of Health American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas BETWEEN MINORITIES AND RESEARCHERS Because of historic inequalities and racism in the health care system, many African Americans may delay seeking health care. Beliefs about health and illness also influence community response to health communication messages designed to promote health and prevent disease. The Burdens of Race and History

National Institute on Minority Health and Health Disparities and Office of the Director, National Institutes of Health American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas BETWEEN MINORITIES AND RESEARCHERS African Americans have higher death rates than Whites for 12 of the 15 leading causes of death. Blacks and American Indians have higher age-specific death rates than Whites from birth through the retirement years. Minorities get sick sooner, have more severe illness and die sooner than Whites Hispanics have higher death rates than whites for diabetes, hypertension, liver cirrhosis & homicide Racial Disparities in Health Source: David Williams, Unnatural Causes, 2008

National Institute of Minority Health and Health Disparities and Office of the Director, National Institutes of Health American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas SCHOOL OF PUBLIC HEALTH  CENTER FOR HEALTH EQUITY Infant Death Rates by Mother’s Education, 1995 Source: David Williams, Unnatural Causes, 2008

National Institute of Minority Health and Health Disparities and Office of the Director, National Institutes of Health American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas SCHOOL OF PUBLIC HEALTH  CENTER FOR HEALTH EQUITY Disparities in Breast Cancer Incidence & Mortality Female Breast Cancer Incidence Rates by Race and Ethnicity, U.S., 1999–2007 Female Breast Cancer Death Rates by Race and Ethnicity, U.S., 1999–2007 Source: Centers for Disease Control and Prevention

National Institute on Minority Health and Health Disparities and Office of the Director, National Institutes of Health American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas BETWEEN MINORITIES AND RESEARCHERS Schulman, K. A., J. A. Berlin, et al. (1999). "The effect of race and sex on physicians' recommendations for cardiac catheterization." N Engl J Med 340(8): “…the race and sex of a patient independently influence how physicians manage chest pain….” (pg. 618)

Personal History Matters Benjamin ThomasLucille W. Thomas, RN

National Institute on Minority Health and Health Disparities and Office of the Director, National Institutes of Health American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas BETWEEN MINORITIES AND RESEARCHERS The Social Context of Health Disparities The ultimate aim is to uncover social, cultural and environmental factors beyond the biomedical model and address a broad range of issues. This approach includes, but not limited to, breaking the cycle of poverty, increasing access to quality health care, eliminating environmental hazards in homes and neighborhoods, and the implementation of effective prevention programs tailored to specific community needs.

National Institute on Minority Health and Health Disparities and Office of the Director, National Institutes of Health American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas BETWEEN MINORITIES AND RESEARCHERS THE FRAMEWORK Photo Credit: Sandra Quinn

National Institute on Minority Health and Health Disparities and Office of the Director, National Institutes of Health American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas BETWEEN MINORITIES AND RESEARCHERS Defining Health Disparities and Health Equity

Institute of Medicine Definition of Health Care Disparities Differences, Disparities, and Discrimination: Populations with Equal Access to Healthcare SOURCE: Gomes and McGuire, 2001

National Institute on Minority Health and Health Disparities and Office of the Director, National Institutes of Health American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas BETWEEN MINORITIES AND RESEARCHERS Health Disparities and Health Equity According to Healthy People 2020 In contrast, a health disparity is “…a particular type of health difference that is closely linked with social, economic, and/or environmental disadvantage.” Health Equity is “…the attainment of the highest level of health for all people.”

National Institute on Minority Health and Health Disparities and Office of the Director, National Institutes of Health American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas BETWEEN MINORITIES AND RESEARCHERS Thomas, S. B., S. C. Quinn, et al. (2011). "Toward a Fourth Generation of Disparities Research to Achieve Health Equity." Annual Review of Public Health 32(1):

National Institute of Minority Health and Health Disparities and Office of the Director, National Institutes of Health American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas SCHOOL OF PUBLIC HEALTH  CENTER FOR HEALTH EQUITY

National Institute of Minority Health and Health Disparities and Office of the Director, National Institutes of Health American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas SCHOOL OF PUBLIC HEALTH  CENTER FOR HEALTH EQUITY Thomas, S. B., S. C. Quinn, Butler, J., Fryer, C..S., Garza, M.A. (2011). "Toward a Fourth Generation of Disparities Research to Achieve Health Equity." Annual Review of Public Health 32(1): The Health Equity Action Research Trajectory: A Platform for 4 th Generation Disparities Research

National Institute on Minority Health and Health Disparities and Office of the Director, National Institutes of Health American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas BETWEEN MINORITIES AND RESEARCHERS THE OPPORTUNITY Photo Credit: Sandra Quinn

National Institute on Minority Health and Health Disparities and Office of the Director, National Institutes of Health American Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas BETWEEN MINORITIES AND RESEARCHERS PATIENT PROTECTION AND AFFORDABLE CARE ACT Signed into Law March 23, 2010

Maryland Health Improvement & Disparities Reduction Act of 2012 Signed into Law by Governor Martin O’Malley on April 10, 2012.

Transforming Health in Prince George's County: A Public Health Impact Study July 2012

“Of all the forms of inequality, injustice in health care is the most shocking and inhumane.” Dr. Martin Luther King Jr., in a speech to the Medical Committee for Human Rights, 1966

THANK YOU Q & A Closing Comments