The Art and Science of Integrating Community-Based Participatory Research Principles and the Undoing Racism

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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

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History

• 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.

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The ART - Trainers, educators, organizers

• The Peoples Institute for Survival and Beyond
  (New Orleans, LA)

• Grassroots leadership
• Undoing racism
• Common definitions
• Learning from history
• Culture sharing
• Accountability
• Gatekeeping

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POWER Social and Institutional

• Access to resources
• The ability to influence others
• Disproportionate access to decision-makers to get
  what you want
• The ability to define reality for yourself, and
  for others

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Definitions-necessary to foster common
understanding for change (PISAB, 2004)

• (1) Constructed Racial Oppression
• 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

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Definitions-necessary to foster common
understanding for change (PISAB, 2004)

• (2) Internalized Racial Oppression
• Carrying negative messages about People of Color
• Limited choices and have a lowered self-esteem
• Cycles through generations

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Definitions-necessary to foster common
understanding for change (PISAB, 2004)

• (3) Granted White Privilege
• 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

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Definitions-necessary to foster common
understanding for change (PISAB, 2004)

• (4) Internalized White Supremacy
• world view is the ONLY world view
• The standards and norms that Whites live by are
  the universal standards and norms
• Illusion of superiority

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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

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Definitions (contd)

• 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

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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

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IOM Explanation of Findings

• Racial and ethnic healthcare disparities
• 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

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A Social Movement

• If we want to dismantle racism,
• then we must be about building
• a movement for social and
• economic justice and change
• Holding institutions accountable

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The Science - C.C.A.R.E.S. (Cancer Care and
Racial Equity Study)

• 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. 
• Funded in September 2006.

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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)

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CBPR continued

• researcher seeks community assistance in problem
  definition, research design, contributing factors
  and potential solutionscommunity becomes the
  collaborator in researchempowering and enabling
  and NOT advisory in nature (Hatch et al, 1993)

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Background

• Breast Cancer incidence rates for African
  American women 139/100,000 compared to
  149/100,000 white women (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 - Regional
Cancer Registry 2001, 2002, 2003)
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• Bringing the Art and Science together

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Story telling sessions

• Small group discussions focused upon reflecting
  and describing experiences of receiving treatment
  in the local healthcare setting

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Storytelling session 3 Themes

• Theme I Stemming from a legacy of legalized
  racism prior 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.
• Theme II The absence of a public structure of
  accountability to prevent /stop racist behaviors
  and practices contributes to a culture which
  perpetuates such practices within all sectors of
  the health care system.
• Theme III DIS-syndrome- when people of color
  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.

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Components of the health care system recognized
during story telling sessions

• Doctors 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

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C.C.A.R.E.S. process (October January)
2 meetings 5 members
5 meetings 9 members
Budget Committee
2 meetings 7 members
4 meetings, 10 members
Reading Committee
3 meetings 8 members
Analysis and Dissemination Committee
Methodology Group/Committee
Research Question Committee
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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?

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AIM 1 Use Breast Cancer Registry to
characterize
AIM 2 Identify Women using Direct Contact and
outreach

• Breast Cancer Care Providers
• Nurses
• Physicians
• Ancillary care services
• (Those identified along the care trajectory)

• Breast Cancer Patients
• African American
• White

• African American pts
• CONTACT
• Mail
• Trained member of Community Collaborative

• White pts
• CONTACT
• Mail
• Trained member of Community Collaborative

• Data collection
• Critical Incident Interviews (3 stages)

• Data collection
• In-depth interviews

ANALYSIS and DISSEMINATION
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Surgery outcomes by race
Surgery Outcomes- White Women (2002)
Surgery Outcomes - Black 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 Removal
Modified Rad Mastectomy w/out
Removal
Partial Mastectomy, NOS
Lumpectomy
Reexcision of Biopsy Site
Mastectomy
Total (simple) Mastectomy w/out
No Surgery
Removal
Total (simple) Mastectomy, NOS
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Research Question 2 For those who discontinued
care, are there differences in experiences
between African American and White women?

• Two CIT interviews each
• Exploring phases of
• (1) diagnosis,
• (2) treatment,
• (3) follow-up of breast cancer care
• Conducted/facilitated by community research and
  academic research partners.

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Critical Incident Technique (CIT) interviewing

• Provides findings that -
• Have an EMPIRICAL basis, grounded in CONCRETE
  events
• Focus on BEHAVIORS that are amenable to change

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Basic Rationale of CIT

• To find out WHY people do something (like
  choosing to continue cancer treatment), ask
  about
• Specific BEHAVIORS
• 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

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Opportunities/Challenges...

• 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!

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• Where we are today
• Systematic cancer registry review
• CIT interviews ongoing
• Developing and expanding the HDC