Reducing Health Disparities through
Community-Engaged Research
Carla Boutin-Foster, MD, MS
Associate Professor of Medicine
Associate Professor of Public Health
Director, Center of Excellence in
Disparities Research
1
Overview
• Provide a brief overview of health
disparities
• Describe the development of the Center of
Excellence in Disparities Research and
Community Engagement (CEDREC)
• Discuss lessons learned in the process of
conducting community-based research
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Definition of Health Disparities
“Health disparities are differences in the
incidence, prevalence, mortality, and burden of
diseases and other adverse health conditions
that exist among specific (racial and ethnic,
cultural, gender) populations in the United
States.” (NIH)
Populations in which disparities exist experience
worse outcomes for chronic conditions, have
higher health care cost, experience lower quality
of life
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The Scope of Health Disparities
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Cardiology
Pulmonary
Renal
Infectious disease
Gastroenterology
Clinical epidemiology
Surgery
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Cardiologists
African-American patients compared with white patients
have lower odds of undergoing CAD procedures, cardiac
catheterization or PTCA
A few studies noted that Hispanic and Asian patients were
also disproportionately less likely to receive such
procedures.
Conflicting results regarding patient refusals as a source of
racial variation.
Less-educated patients and patients who were not as
experienced with the procedure were more likely to decline
PTCA.
Physician bias has also been associated with racial
variation in recommendations for treatment.
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Cardiologists
Coronary heart disease death rates are higher for
black males and females than their white counterparts
Blacks are nearly twice as likely to have a first stroke and
1.8 times more likely to die from one than whites
High blood pressure is more prevalent and is associated
with poorer outcomes in blacks than whites
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Hepatology, GI, and ID
• Epidemiology data demonstrate the prevalence
of HCV higher in African Americans, Mexican
Americans (only one Latino group) than Whites
• Studies of peg-interferon and ribavirin, suggests
a lower sustained virologic response (SVR) rate
in African Americans and Latinos
• Racial and ethnic differences may be due to
intrinsic interferon signaling, HCV-specific T cell
responses, viral kinetic response or cytokine
production. Differences in body mass index,
insulin resistance, steatosis, fibrosis and
medication adherence.
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Oncologists
• Although cancer death rates have declined, the rate
of decline is less in blacks
• Black men have the highest incidence of prostate
cancer and are more than twice as likely to die
• White women have the highest incidence of breast
cancer but Black women are most likely to die from
breast cancer
• Blacks have the higher incidence of advanced
colorectal cancer and death rates
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Oncologists
• Only 25% of pharmacies in nonwhite
neighborhoods had opioid supplies as compared
with 72% of pharmacies in white neighborhoods
• Among outpatients with metastatic cancer, 65%
of the minority patients did not receive
recommended guidelines compared with 50% of
nonminority patients
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Pulmonary
• Higher rates of asthma are consistently found
among certain minority racial/ethnic groups,
particularly African American, American Indian
and Puerto Rican populations
• Worse asthma control
• Higher rates of asthma exacerbations and
missed days from school or work
• Greater rates of emergency department (ED)
utilization
• Higher mortality rates
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Renal
• The rate of diabetic ESRD is 2.6 times higher
among African Americans than among whites.
• ESRD is more likely to be related to type 2
diabetes among African Americans than it is
among whites
• Rates of early stage kidney disease (proteinuria)
are higher among Hispanic Americans, African
Americans, and American Indians than among
the white population
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Surgery
• Disparities exist in total joint replacements
• Racial and ethnic minority patients may
not be referred for surgery at same rate
• Race is an independent predictor of poor,
postoperative outcomes
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OB\GYN
• Higher rates premature births
• Lack of pre-natal care
• Higher maternal mortality
• Greater comorbid conditions in racial and
ethnic minorities women of child bearing
age
• Higher rates of cervical cancer
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Solutions to Health Disparities
• Require looking beyond race and ethnicity
and at the social context
• Multidimensional research and policy
interventions
• Communities must be engaged and
involved
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Center of Excellence in Disparities Research
Established in 2009, CEDREC’s mission is to improve
minority health through interdisciplinary research, outreach,
and training. This is implemented through 4 cores:
Research
To expand the capacity for conducting innovative health
disparities research in Central Harlem and the South Bronx
Education
To train a diverse group of junior investigators to be able to
conduct their own health disparities research
Community Engagement
To create new collaborations that will accelerate the
dissemination of research findings, inform novel community
based programs, and build community capacity for research
Administrative
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Research Core
Research focuses on reducing health disparities in
cardiovascular disease, hypertension, obesity, and
colorectal cancer screening by focusing on factors
that promote adherence to a healthy lifestyle.
Study subjects are adults, largely African-American,
recruited from medically underserved communities
of the South Bronx and Harlem.
Interventions are framed on social cognitive theory,
self-efficacy theory, positive affect, self-affirmation
theory, and motivational interviewing.
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Community Engagement Outreach
Core
The Community Engagement Outreach Core provides a
strong link to the community, and participates in research
activities and program development.
Hunter College School of Nursing
Lincoln Medical and Mental Health Center
Renaissance Health Care Network
Center for Healthful Behavior Change-NYU (Black Men
Initiative)
CEDREC Studies
• Address chronic disease management and
prevention
• Community-based
• Apply behavioral constructs
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Community Setting
• Patients in the community setting more closely
mirror at-risk populations
• Goal was to enroll more men who may not want
to come to WCMC
• Effects are generalizable outside academic
setting where most physicians had some
familiarity with research
• Engages communities in academic research as
way of increasing minority enrollment in clinical
trials
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CBPR as an approach
A process of scientific inquiry in which community
members, persons affected by the health
condition, disability or issue under study, or other
key stakeholders in the community's health, have
the opportunity to participate in various stages of
the study
(design - conduct - analysis - interpretation conclusions - communication of results)
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CBPR
• Multidisciplinary - involves stakeholders
from various sectors
• Collaborative process
• Action-oriented
• Co-learning
• Community enhancement / empowerment
• Social transformation and change beyond
research project
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CBPR and Disparities Research
Facilitate more effective dissemination of
research findings to impact public health and
policy
Increase the potential for translation of
evidence-based research into sustainable
community change that can be disseminated
more broadly
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Positive Affect
Positive affect is a mild happy affective state that
can be induced through the receipt of unexpected
and small gift items or by directing patients to
focus on previous positive events.
Positive affect enhances creative thinking,
facilitates complex decision making, and problem
solving.
Positive affect may enhance self-efficacy by linking
positive expectations with a task (more likely to
complete a task).
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Self-affirmation theory
Thought processes are influenced by an adequate
self-image, adequate perception of self.
Self-affirmation can be induced through the active
use of positive statements or memories about one's
prior successes to build self-confidence.
Self-affirmation enhances the ability to overcome
negative expectations of one's ability by drawing on
previous experiences of success, such as
overcoming obstacles, which is associated with
greater receptivity of health messages and behavior
specific self-efficacy.
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Motivational Interviewing
Motivational interviewing is a patient-centered
counseling technique designed to motivate
patients to recognize and resolve the discrepancy
between their present behavior and a desired
future goal or outcome. Some general principles:
(1) expressing empathy, by use of reflective
listening; (2) developing discrepancy between
client goals and current problem behavior; (3)
avoiding argumentation by assuming that the client
is responsible for the decision to change; (4) rolling
with resistance, rather than confronting or
opposing it; and (5) supporting self-efficacy and
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optimism for change.
MISTER-B
Multibehavior Intervention to Increase Screening
and Enhance Risk Reduction in Black Men
(MISTER-B) is a randomized trial conducted in
barbershops targeting hypertensive black men
over age 50 who have not had colorectal cancer
screening.
MISTER-B applies strategies to improve the rates
of blood pressure control and colorectal cancer
screening: therapeutic lifestyle counseling using
motivational interviewing and peer counseling
using trained patient navigators.
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OASIS
Osteoarthritis Symptom Improvement Study
is designed to test a pilot intervention that uses
self-affirmation and motivational interviewing as
strategies for boosting intrinsic motivation and
enabling patients to be more proactive in their
management of osteoarthritis.
Enrolling 60 patients from two academic
practices and community setting.
Supported by a grant from the Zimmer Foundation
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TRIUMPH Study
Trial Using Motivational Interviewing Positive
Affect and Self-Affirmation in Hypertension
(TRIUMPH)
The objective of this study is to improve blood
pressure control among African-Americans
with uncontrolled hypertension.
Hypertension Disparities
Compared to Caucasians, African-Americans:
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Experience hypertension at an earlier age
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Have higher morbidity and mortality rates
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Have a 1.8 times greater rate of fatal stroke,
a 1.5 times greater rate of heart disease
death, and a 4 times greater rate of end stage
kidney disease.
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TRIUMPH Study
Positive affect is a pleasurable state of mild
happiness, enthusiasm, or alertness.
Studies have shown that giving people
unexpected gifts can induce this state.
In this study we will use an approach in which
patients are asked to think about the small
things that make them feel good, things that
cause them to smile.
TRIUMPH Study
In addition, we will use a technique known as
motivational interviewing that engages
participants to reflect on barriers to taking
their medications regularly, as well as a
technique known as self- affirmation, where
patients are asked to focus on proud moments
on a daily basis.
TRIUMPH Study
The TRIUMPH study is being conducted among 220
adult African-Americans:
- who have a diagnosis of hypertension on their
medical charts and are currently on
antihypertensive medications
- who have documented blood pressure readings
above the recommended guidelines on more than
two occasions on their medical charts
TRIUMPH Study
Patients are recruited from the Renaissance
Health Care Network sites as well as Lincoln
Hospital’s ambulatory care practices.
Eligible patients are consented and randomized
to one of two groups: 1) Positive affect/selfaffirmation and motivational interviewing OR
2) Educational group.
TRIUMPH Study
All participants in the study will receive:
Educational workbook
• Home blood pressure monitors
• Blood pressure contract
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The experimental group will receive:
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Positive Affect / Self-Affirmation and
motivational interviewing via telephone
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Gifts every two months as a way to reinforce
positive affect
TRIUMPH Study
Study participants will be followed every 2
months for one year
Outcome is blood pressure control at 12
months
Secondary outcomes: medication adherence,
depressive symptoms, and perceived stress
Lessons Learned
• Engage community providers
• Adapt recruitment strategies to the context
• Reconsider policies
• Respond to social determinants
• Listen to community voices
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Lessons on Engaging Community
Practitioners
“You want us to do what?”
An important aspect of conducing community based
studies is to gain the support of the providers.
Some of the reasons cited in research include: lack of trust,
negative prior experiences with researchers, unclear
incentives, and unrealistic expectations of researchers.
Concerns that were raised in the process of TRIUMPH:
Increased work load
Disruption of work flow
Perception of patients (that their blood pressure is not
under control)
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Engaging Community Practitioners
Meetings have to align with their schedule.
Carefully review the protocol with the clinicians in the
proposed research setting.
Change and adjust recruitment schedule to weekends
and evenings.
These practice sites are very busy and care for
patients with multiple comorbid conditions.
There was a need to cultivate research interest in the
general practice (nurses, administrators, doctors).
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Recruitment
“Please do not approach patients in the waiting area”
Borrow and negotiate space
Work around their structure and clinical operations
Incentives:“to give or not to give”
Patient privacy - knew each other
Separate recruitment table
Bags with blood pressure cuffs (NOT out in the open)
Attract participants: colorful bag with logo
Participants had to come to us
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Policy change
“May I see some ID before you take these charts”
Apply for IRB from the settings—they wanted to
use their IRB for their patients, not Cornell’s
Change in IRB practices
Access to data (in the spirit of participatory
research)
Ownership of patient files
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Responding to social
determinants
“These are real patients with real problems - they
need real money.”
Change items for gifts
Referrals to social services
Transportation
Transient living
Participant lost jobs and could not take medications
to continue with the study
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Responding to community
voices
“Why aren’t there any Latinos in your study?”
Desire to have more studies focus on Latinos
Community really were interested in diabetes,
obesity, mental health as top priorities
Child health (obesity)
Study design match community interest
Avoid widening gaps
Develop creative solutions (conduct pilot studies)
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Recommendations
• Engage providers
• Know the territory
• Be flexible / Institutional policy change
• Willing to relinquish hold
• Involve practitioners
• Patient incentives
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Recommendations
• Embrace CBPR paradigm
• Understand social determinants
• Hire and train community-based
physicians to establish a presence (train
community physicians for research)
• NIH funding indirect equitable
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Implications for Advancing
Community Engaged Research
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Community academic trust
Dissemination
Implementation
Move from explanatory to more pragmatic
trials
• Translational research
• Uptake of guidelines
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New Directions
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Environmental Health Core
The mission of the Core is to advance and
accelerate transdisciplinary environmental
health disparities research and strengthen
community capacity to address environmental
health issues through research and policy.
Funded by a supplement to CEDREC to
develop infrastructure for environmental health
disparities research.
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Goals
Build community-academic partnerships with CBOs
in environmental justice that will help to inform
future studies:
• Impact of residential segregation
• Link environmental exposures and disparities
• Link between genetics-environment-disparities
• Impact of natural disasters on local communities
preparedness and health effects
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Clinicians,
Behavioral Social
Scientists,
Epidemiologists
Community
Basic
Scientists,
Geneticists
Biostatisticians
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