Successful Engagement of Minorities in Research: A ... presentation.pdf · A Building Trust Between...

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



THE OPPORTUNITY

Photo Credit: Sandra Quinn



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.



THE CHALLENGE




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.



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





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



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.”



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



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



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).



Tackling a Racial Gap in Breast Cancer Survival

New York Times 12-20-13



THE FRAMEWORK




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.





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



INNOVATIVE METHODS




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.



DANGER AND OPPORTUNITY




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



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

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