The Art and Science of Integrating
Community-Based Participatory Research
Principles and the Undoing Racism
Nettie Coad
The Partnership Project
& Greensboro Health Disparities Collaborative
Eugenia Eng
Professor, Department of Health Behavior and Health Education
University of North Carolina at Chapel Hill
History
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Four year partnership between The
Partnership Project, UNC, and community
partners
ALL members take part in Undoing Racism
training
Full Value Contract
Goal: To build community capacity to hold
institutions (like health care) accountable.
Research is one component of this process.
The ART - Trainers, educators,
organizers…
The People’s Institute
for Survival and
Beyond (New Orleans, LA)
Grassroots leadership
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Undoing racism
Common definitions
Learning from history
Culture sharing
Accountability
Gatekeeping
POWER:
Social and Institutional
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Access to resources
The ability to influence others
Disproportionate access to decisionmakers to get what you want
The ability to define reality for yourself,
and for others
Definitions-necessary to foster common
understanding for change (PISAB, 2004)
(1) Constructed Racial Oppression:
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Historical and systemic/NOT individual
Penetrates every aspect of our personal,
institutional, and social lives
A Person of Color is seen as a member of a
group, not as an individual
People of Color have fewer options or choices
Definitions-necessary to foster common
understanding for change (PISAB, 2004)
(2) Internalized Racial Oppression:
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Carrying negative messages about People of
Color
Limited choices and have a lowered selfesteem
Cycles through generations
Definitions-necessary to foster common
understanding for change (PISAB, 2004)
(3) Granted White Privilege:
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“invisible, weightless knapsack” of special
provisions (McIntosh)
Default position: “to be White in America is
to not have to think about it”
Seen as an individuals, not a reflection on
White race
Although hurt by racism, we can live without
having to deal with it
Definitions-necessary to foster common
understanding for change (PISAB, 2004)
(4) Internalized White Supremacy
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world view is the ONLY world view
The standards and norms that Whites live by
are the universal standards and norms
Illusion of superiority
Definitions-necessary to foster common
understanding for change (PISAB, 2004)
Prejudice: an attitude which is based on
limited information, often on stereotypes,
but not always negative
– Denies the individuality of a person, their
uniqueness and assets
Oppression: systematic subjugation of one
social group by another more powerful
social group for economic, political or social
benefit
Definitions (cont’d)…
Oppression = power + prejudice
– The oppressors have the power to define
reality for themselves and others
– Members of BOTH groups are socialized to
play respective roles as “normal” or “correct”
Racism = power + racial prejudice
– A system of advantage based on race
– A system of oppression based on race
IOM Definition of
Healthcare Disparities
“…racial or ethnic differences in the
quality of healthcare that are not due to
access-related factors or clinical needs,
preferences, and appropriateness of
intervention”
IOM Explanation of Findings:
Racial and ethnic healthcare disparities:
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Are impacted by bias, stereotyping,
prejudice, and clinical uncertainty on the part
of healthcare providers
Are not explained by the few studies that
suggest that racial and ethnic minority
patients are more likely than white patients
to refuse treatment
A Social Movement
“If we want to dismantle racism,
then we must be about building
a movement for social and
economic justice and change”
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Holding institutions accountable
The Science - C.C.A.R.E.S.
(Cancer Care and Racial Equity Study)
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A CBPR partnership between local organizations,
community members, and UNC, the Health
Disparities Collaborative in designing and
submitting an NIH R21 grant application to
examine the possible prevalence of and potential
explanations for disparities in deviations from
reasonable breast cancer care. This study will
combine secondary analysis of cancer
registry data with the qualitative methods of critical
incident interview using a grounded theory.
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Funded in September 2006.
Community-Based Participatory
Research (in Wallerstein and Duran, 2003)
“CBPR recognizes the importance of
establishing relationships beyond that
of expert and client, the actual
practice between outside researchers
and community members remains
complex and involves making
transparent the POWER differences,
recognized or not“ (Scott, 1990)
CBPR continued…
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“researcher seeks community
assistance in problem definition,
research design, contributing factors
and potential solutions…community
becomes the collaborator in
research…empowering and enabling
and NOT advisory in nature” (Hatch et al,
1993)
Background
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Breast Cancer incidence rates for African American
women 139/100,000 compared to 149/100,000 white
women
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(NC State Center for Health Statistics, 2002)
African American women with breast cancer were
about 1.5 times more likely to die from this disease
than their white counterparts
(NC Office of Minority Health and
Health Disparities, 2003)
Breast Cancer x Race x Stage 2002
Breast Cancer x Race x Stage 2003
50
45
45
45
40
40
40
35
35
35
30
Black
30
25
White
30
25
%
%
%
Breast Cancer x Race x Stage 2001
50
25
20
20
20
15
15
10
10
10
5
5
5
0
15
0
Stage 0
Stage I
Stage II
Stage III Stage IV
0
Stage 0
Stage I
Stage II
Stage III
Stage IV
Stage 0
Stage I
Stage II
(Breast Cancer x Race x Stage - Regional Cancer Registry: 2001, 2002, 2003)
Stage III
Stage IV
Bringing the Art and Science
together…
Story telling sessions
Small group discussions focused upon
reflecting and describing experiences
of receiving treatment in the local
healthcare setting
Storytelling session: 3 Themes
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Theme I: Stemming from a legacy of legalized racism prior
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Theme II: The absence of a public structure of
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Theme III: “DIS-syndrome”- when people of color
to 1964, the lack of common history and understanding
between Blacks and Whites contributes to a culture of
complacency and inferiority between health professionals and
patients of color.
accountability to prevent /stop racist behaviors and practices
contributes to a culture which perpetuates such practices
within all sectors of the health care system.
enter the health care system and experience disrespectful
behaviors (verbal and non-verbal), are dismissed and
disbelieved, experience distance when receiving care that is
frequently filtered by stereotypes.
Components of the health care system
recognized during story telling sessions:
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Doctor’s office / private practice
Hospital (system, staff, patient experiences)
Health clinic
OB/Gynecologists
Dentists
Medical school / medical training
Emergency Department (ED)
Health care organization
Health care services provided within detention
center
C.C.A.R.E.S. process
(October – January)
Budget Committee
Reading Committee
Analysis and Dissemination Committee
Methodology Group/Committee
Research Question Committee
CCARES Research questions
(1)
What are the recommended standards for
reasonable breast cancer care for women with
stages 0-4 disease? Are there deviations?
(2)
For those who discontinued care, are there
differences between African American and White
women?
(3)
What protocols exist for detecting deviations from
reasonable breast cancer care?
AIM 1:
AIM 2:
Use Breast Cancer Registry to characterize
Identify Women using Direct Contact and outreach
Breast Cancer Care Providers
Nurses
Physicians
Ancillary care services
Breast Cancer Patients
•African American
•White
(Those identified along the care
trajectory)
African American pts
CONTACT:
Mail
Trained member of
Community
Collaborative
Data collection
In-depth interviews
White pts
CONTACT:
Mail
Trained member of
Community
Collaborative
Data collection
Critical Incident Interviews
(3 stages)
ANALYSIS and DISSEMINATION
Surgery outcomes by race…
Surgery Outcomes - Black Women
(2002)
Surgery Outcomes- White Women
(2002)
Lumpectomy
Mastectomy
No Surgery
Comb of 41 w Recoon, NOS
Comb of 41 w Recoon, Tissue)
Lumpectomy or Excisional Biopsy
Mastectomy, NOS
Modified Rad Mastectomy w Remov
Modified Rad Mastectomy w/out
Removal
Partial Mastectomy, NOS
Lumpectomy
Mastectomy
No Surgery
Reexcision of Biopsy Site
Total (simple) Mastectomy w/out
Removal
Total (simple) Mastectomy, NOS
Research Question 2: For those who discontinued
care, are there differences in experiences between
African American and White women?
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Two CIT interviews each
Exploring phases of
– (1) diagnosis,
– (2) treatment,
– (3) follow-up of breast cancer care
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Conducted/facilitated by community
research and academic research partners.
Critical Incident Technique (CIT)
interviewing
Provides findings that 
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Have an EMPIRICAL basis, grounded in
CONCRETE events
Focus on BEHAVIORS that are amenable to
change
Basic Rationale of CIT
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To find out WHY people do something (like
choosing to continue cancer treatment), ask
about:
– Specific BEHAVIORS
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To IDENTIFY CRITICAL REQUIREMENTS
of an activity or decision process (like
providing good medical care or developing a
relationship), ask about:
– Specific BEHAVIORS that made the difference
between decision to continue or discontinue care
Opportunities/Challenges...
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Developing a common language
and understanding
Developing and cultivating trust
Open communication
Embracing conflict
Maintaining respect and patience
Exercising flexibility
And being willing to
hear and listen!
Where we are today:
 Systematic cancer registry review
 CIT interviews ongoing
 Developing and expanding the
HDC