Presentation Transcript

1. 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 www.healthequity.umd.edu https://twitter.com/umdhealthequity November 20, 2013 HealthCare Plexus Webinar twitter: #plexus-tuskegee
2. 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
3. buildingtrust.umd.org
4. Agenda The Historical Context The Challenge The Framework The Opportunity
5. HISTORICAL CONTEXT Photo Credit: Sandra Quinn
6. THE CHALLENGE Photo Credit: Sandra Quinn
7. “…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, 1997 http://www.cdc.gov/tuskegee/clintonp.htm
8. Source: Thomas, S. (2000). The Legacy of Tuskegee AIDS and African Americans. The Body Positive: The Complete HIV/AIDS Resource http://www.thebody.com/content/art30946.html#anatomy
9. 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
10. THE OFFICIAL NAME AFTER THE 1997 PRESIDENTIAL APOLOGY “The U.S. Public Health Service Study Done at Tuskegee (1932-1972) ”
11. 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
12. The Burdens of Race and History 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.
13. Racial Disparities in Health 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 Source: David Williams, Unnatural Causes, 2008
14. Infant Death Rates by Mother’s Education, 1995 Source: David Williams, Unnatural Causes, 2008
15. Disparities in Breast Cancer Incidence & Mortality Female Breast CancerIncidence Rates by Race and Ethnicity, U.S., 1999–2007 Female Breast CancerDeath Rates by Race and Ethnicity, U.S., 1999–2007 Source: Centers for Disease Control and Prevention
16. 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)
17. Personal History Matters Benjamin Thomas Lucille W. Thomas, RN
18. 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.
19. THE FRAMEWORK Photo Credit: Sandra Quinn
20. Defining Health Disparities and Health Equity
21. Institute of Medicine Definition of Health Care DisparitiesDifferences, Disparities, and Discrimination: Populations with Equal Access to Healthcare SOURCE: Gomes and McGuire, 2001
22. 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.”
23. 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.
24. The Health Equity Action Research Trajectory: A Platform for 4th Generation Disparities Research 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
25. THE OPPORTUNITY Photo Credit: Sandra Quinn
26. PATIENT PROTECTION AND AFFORDABLE CARE ACT Signed into Law March 23, 2010
27. Maryland Health Improvement & Disparities Reduction Act of 2012 Signed into Law by Governor Martin O’Malley on April 10, 2012.
28. Transforming Health in Prince George's County: A Public Health Impact Study July 2012
29. http://www.buildingtrustumd.org
30. “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
31. THANK YOU Q & A Closing Comments