Distrust, Race and Research: Beyond the Legacy of Tuskegee Stephen B. Thomas, Ph.D. Professor Health Services Administration School of Public Health Director,

BETWEEN MINORITIES AND RESEARCHERS

Distrust, Race and Research: Beyond the

Legacy of Tuskegee

Stephen B. Thomas, Ph.D.Professor Health Services Administration

School of Public HealthDirector, Maryland Center for Health Equity

University of MarylandCollege Park, MD

www.healthequity.umd.eduhttps://twitter.com/umdhealthequity

November 20, 2013HealthCare Plexus Webinar twitter: #plexus-tuskegee

http://www.healthequity.umd.edu/

https://twitter.com/umdhealthequity

https://twitter.com/umdhealthequity

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 ResearchArchitects 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


1. The Historical Context2. The Challenge3. The Framework4. The Opportunity

Agenda



HISTORICAL CONTEXT

Photo Credit: Sandra Quinn


https://vimeo.com/68655032



THE CHALLENGE




“…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 HouseMay 16, 1997http://www.cdc.gov/tuskegee/clintonp.htm

http://www.cdc.gov/tuskegee/clintonp.htm



Source: Thomas, S. (2000). The Legacy of Tuskegee AIDS and African Americans. The Body Positive: The Complete HIV/AIDS Resourcehttp://www.thebody.com/content/art30946.html#anatomy

http://www.thebody.com/content/art30946.html%23anatomy

http://www.thebody.com/content/art30946.html%23anatomy



Source: Sandra C. Quinn and Stephen B. Thomas (2000). Presidential Apology for the Study at Tuskegee. Encyclopedia Britannica: http://www.britannica.com/EBchecked/topic/1369625/Presidential-Apology-for-the-Study-at-Tuskegee

http://www.britannica.com/EBchecked/topic/1369625/Presidential-Apology-for-the-Study-at-Tuskegee

http://www.britannica.com/EBchecked/topic/1369625/Presidential-Apology-for-the-Study-at-Tuskegee

THE OFFICIAL NAME AFTER THE 1997 PRESIDENTIAL APOLOGY

“The U.S. Public Health Service Study Done at Tuskegee (1932-

1972) ”

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



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



• 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



Infant Death Rates by Mother’s Education, 1995

Source: David Williams, Unnatural Causes, 2008



Disparities in Breast Cancer Incidence & MortalityFemale 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



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):

618-626.

“…the race and sex of a patient independently influence how physicians manage chest pain….” (pg. 618)

Personal History Matters

Benjamin Thomas Lucille W. Thomas, RN



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.



THE FRAMEWORK




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



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.”



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): 399-416.





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): 399-416

The Health Equity Action Research Trajectory: A Platform for 4th Generation Disparities Research



THE OPPORTUNITY




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

http://www.buildingtrustumd.org

http://www.buildingtrustumd.org/

http://www.buildingtrustumd.org/


“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

https://vimeo.com/68655032


THANK YOU

Q & A

Closing Comments

Documents

Distrust, Race and Research: Beyond the Legacy of Tuskegee Stephen B. Thomas, Ph.D. Professor Health Services Administration School of Public Health Director,