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Successful Engagement ofMinorities in Research:
A Building Trust BetweenMinorities and Researchers
To Achieve Health Equity
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.edu
National Institute of Minority Health and Health Disparities and Office of the Director, National Institutes of HealthAmerican Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
SCHOOL OF PUBLIC HEALTH § CENTER FOR HEALTH EQUITY
Architects of Community Engaged Research
Drs. Mary A. Garza, Craig S. Fryer, Stephen B. Thomas, Sandra C. Quinn and James Butler, III
http://www.buildingtrustumd.org
National Institute of Minority Health and Health Disparities and Office of the Director, National Institutes of HealthAmerican Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
SCHOOL OF PUBLIC HEALTH § CENTER FOR HEALTH EQUITY
THE OPPORTUNITY
Photo Credit: Sandra Quinn
National Institute of Minority Health and Health Disparities and Office of the Director, National Institutes of HealthAmerican Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
SCHOOL OF PUBLIC HEALTH § CENTER FOR HEALTH EQUITY
AFFORDABLE CARE ACT of 2010
Maryland Health Improvement & Disparities
Reduction Act of 2012
Signed into Law by Governor Martin O’Malley on April 10, 2012.
National Institute of Minority Health and Health Disparities and Office of the Director, National Institutes of HealthAmerican 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 HealthAmerican Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
SCHOOL OF PUBLIC HEALTH § CENTER FOR HEALTH EQUITY
The Social Context ofHealth Disparities
The ultimate aim is to uncover social,cultural and environmental factors beyondthe biomedical model and address a broadrange of issues. This approach includes,but not limited to, breaking the cycle ofpoverty, increasing access to quality healthcare, eliminating environmental hazards inhomes and neighborhoods, and theimplementation of effective preventionprograms tailored to specific communityneeds.
National Institute of Minority Health and Health Disparities and Office of the Director, National Institutes of HealthAmerican Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
SCHOOL OF PUBLIC HEALTH § CENTER FOR HEALTH EQUITY
Because of historic inequalitiesand racism in the health caresystem, many African Americansmay delay seeking health care.Beliefs about health and illnessalso influence communityresponse to health communicationmessages designed to promotehealth 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 HealthAmerican Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
SCHOOL OF PUBLIC HEALTH § MARYLAND CENTER FOR HEALTH EQUITY
History Matters
National Institute on Minority Health and Health Disparities and Office of the Director, National Institutes of HealthAmerican Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
SCHOOL OF PUBLIC HEALTH § MARYLAND CENTER FOR HEALTH EQUITY
National Institute on Minority Health and Health Disparities and Office of the Director, National Institutes of HealthAmerican Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
SCHOOL OF PUBLIC HEALTH § MARYLAND CENTER FOR HEALTH EQUITY
U.S. Public Health Service SyphilisStudy done at Tuskegee (1932-1972)
A doctor draws blood from oneof the Tuskegee test subjects
The Tuskegee SyphilisStudy, described asarguably the most
infamous biomedicalresearch study in U.S.
History
Cultural
Memory
National Institute on Minority Health and Health Disparities and Office of the Director, National Institutes of HealthAmerican Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
SCHOOL OF PUBLIC HEALTH § MARYLAND CENTER FOR HEALTH EQUITY
Health Disparities and Health Equity
According to Healthy People 2020
• A health disparity is “…a particular type of healthdifference that is closely linked with social,economic, and/or environmental disadvantage.”
• In contrast, health equity is “…the attainment of thehighest level of health for all people.”
National Institute on Minority Health and Health Disparities and Office of the Director, National Institutes of HealthAmerican Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
SCHOOL OF PUBLIC HEALTH § MARYLAND CENTER FOR HEALTH EQUITY
AIDS Cases Among Adults and Adolescents by
Race/Ethnicity
Last Modified: April 28, 2011Content Source:Divisions of HIV/AIDS PreventionNational Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention
National Institute on Minority Health and Health Disparities and Office of the Director, National Institutes of HealthAmerican Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
SCHOOL OF PUBLIC HEALTH § MARYLAND CENTER FOR HEALTH EQUITY
Disparities in Breast Cancer Incidence & Mortality
Female Breast CancerIncidence Rates by RaceIncidence Rates by Race
and Ethnicity, U.S., 1999–2007
Female Breast CancerMortality by Race and
Ethnicity in US, 1999-2007Death 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 HealthAmerican Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
SCHOOL OF PUBLIC HEALTH § MARYLAND CENTER FOR HEALTH EQUITY
If You are Black:
Breast Cancer First Diagnosis at Stage 3 or 4
“Black women often arrive at the hospital with cancersso advanced, they rival the late-stage disease thatdoctors see among women in developing nations…20% of African-American women with breast cancerdid not learn of their disease until it had advanced toStage 3 or 4. By comparison, only 11 percent of whitewomen learn at late stages”
(NYT 12-20-13).
National Institute on Minority Health and Health Disparities and Office of the Director, National Institutes of HealthAmerican Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
SCHOOL OF PUBLIC HEALTH § MARYLAND CENTER FOR HEALTH EQUITY
Tackling a Racial Gap in Breast Cancer Survival
New York Times 12-20-13
National Institute on Minority Health and Health Disparities and Office of the Director, National Institutes of HealthAmerican Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
SCHOOL OF PUBLIC HEALTH § MARYLAND CENTER FOR HEALTH EQUITY
THE FRAMEWORK
Photo Credit: Sandra Quinn
National Institute on Minority Health and Health Disparities and Office of the Director, National Institutes of HealthAmerican Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
SCHOOL OF PUBLIC HEALTH § MARYLAND CENTER FOR HEALTH EQUITY
Thomas, S. B., S. C. Quinn, et al. (2011). "Toward a Fourth Generation ofDisparities Research to Achieve Health Equity." Annual Review of PublicHealth 32(1): 399-416.
National Institute on Minority Health and Health Disparities and Office of the Director, National Institutes of HealthAmerican Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
SCHOOL OF PUBLIC HEALTH § MARYLAND CENTER FOR HEALTH EQUITY
National Institute on Minority Health and Health Disparities and Office of the Director, National Institutes of HealthAmerican Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
SCHOOL OF PUBLIC HEALTH § MARYLAND CENTER FOR HEALTH EQUITY
Thomas, S. B., S. C. Quinn, Butler, J., Fryer, C..S., Garza, M.A. (2011). "Toward a Fourth Generation ofDisparities 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
National Institute of Minority Health and Health Disparities and Office of the Director, National Institutes of HealthAmerican Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
SCHOOL OF PUBLIC HEALTH § CENTER FOR HEALTH EQUITY
INNOVATIVE METHODS
Photo Credit: Sandra Quinn
National Institute of Minority Health and Health Disparities and Office of the Director, National Institutes of HealthAmerican Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
SCHOOL OF PUBLIC HEALTH § CENTER FOR HEALTH EQUITY
Common Community Engagement Strategies
1. Hire people from the target population
2. Include minority investigators and staff onthe research team
3. Develop a community advisory board
4. Sustain community partnerships onceresearch and funding have ended
Harris et al., 2001; Horowitz et al., 2009
2001 FEDERAL DHHS
TAKE A LOVED ONE TO THE DOCTOR DAY
4th GENERATION APPROACH:
TAKE A HEALTH PROFESSIONALTO THE PEOPLE
THE HEALTHY BLACKFAMILY PROJECT
(2004-2012)
A Community-BasedDemonstration Project
Designed for HealthPromotion and Disease
Prevention
NIH-NIMHD PG60MD000207
HEALTHY BLACK FAMILY PROGRAM ACTIVITIES
Physical Activity
Nutrition Education & Guidance
Stress Management
Smoking Cessation
Family Health History
Self-Management of Chronic Disease
Referral to Medical Home
Ford, A., Reddick, K., Browne, M., Robins, A., THOMAS, S. & Quinn S. (2009). Beyond the cathedral: Building trust to engagethe African American community in health promotion & disease prevention. Health Promotion Practice, 10, 485-489.
Health Advocates In-Research and Research (H.A.I.R.)Network of Black Barbershops & Beauty Salons
Linnan, L., THOMAS, S., D’Angelo,H., & Ferguson, Y. (2012). AfricanAmerican barbershops and beautysalons: An innovative approach toreducing health disparities throughcommunity building and healtheducation In M. Minkler (Ed.),
(3rd Edition). New Brunswick,NJ: Rutgers University Press.
National Institute on Minority Health and Health Disparities and Office of the Director, National Institutes of HealthAmerican Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
SCHOOL OF PUBLIC HEALTH § MARYLAND CENTER FOR HEALTH EQUITY
DANGER AND OPPORTUNITY
Photo Credit: Sandra Quinn
National Institute of Minority Health and Health Disparities and Office of the Director, National Institutes of HealthAmerican Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
SCHOOL OF PUBLIC HEALTH § CENTER FOR HEALTH EQUITY
The danger is to assume that:
1. racism is not relevant in the scientific pursuit ofsolutions for the elimination of health disparities;
2. that some populations will always suffer prematureillness and death by virtue of their culture boundlifestyle choices; and thus,
3. that the elimination of disparities is impossible andhealth equity unachievable in a free market society.
Thomas, S. B., S. C. Quinn, Butler, J., Fryer, C..S., Garza, M.A. (2011). "Toward aFourth Generation of Disparities Research to Achieve Health Equity." AnnualReview of Public Health 32(1): 399-416
National Institute of Minority Health and Health Disparities and Office of the Director, National Institutes of HealthAmerican Reinvestment and Recovery Act RC2MD004766; Principal Investigators: Sandra Quinn & Stephen Thomas
SCHOOL OF PUBLIC HEALTH § CENTER FOR HEALTH EQUITY
The opportunity is to recognize healthdisparities as an issue of justice because specificgroups were subjected to systematic racialdiscrimination and denied the basic benefits ofsociety, a violation of the social contract.
Boucher, David and Paul Kelly, eds. 1994.The Social Contract from Hobbes to Rawls,New York: Routledge