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

1. Eugenia Eng Professor, Department of Health Behavior and Health Education University of North Carolina at Chapel Hill The Art and Science of Integrating Community-Based Participatory Research Principles and the Undoing Racism Nettie Coad The Partnership Project & Greensboro Health Disparities Collaborative

2. 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.

3. The People’s Institute for Survival and Beyond(New Orleans, LA) Grassroots leadership Undoing racism Common definitions Learning from history Culture sharing Accountability Gatekeeping The ART - Trainers, educators, organizers…

4. 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

5. 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

6. 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

7. 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

8. 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

9. 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

10. 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

11. 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”

12. 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

13. 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

14. 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.

15. 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)

16. CBPR continued… • “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)

17. 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)

18. Bringing the Art and Science together…

19. Story telling sessions Small group discussions focused upon reflecting and describing experiences of receiving treatment in the local healthcare setting

20. 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.

21. Components of the health care system recognized during story telling sessions: • 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

22. 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

23. CCARES Research questions • What are the recommended standards for reasonable breast cancer care for women with stages 0-4 disease? Are there deviations? • For those who discontinued care, are there differences between African American and White women? • What protocols exist for detecting deviations from reasonable breast cancer care?

24. 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 • In-depth interviews • Data collection • Critical Incident Interviews (3 stages) ANALYSIS and DISSEMINATION

25. 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 NoSurgery Removal Total (simple) Mastectomy, NOS

26. 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.

27. Critical Incident Technique (CIT) interviewing Provides findings that - • Have an EMPIRICAL basis, grounded in CONCRETE events • Focus on BEHAVIORS that are amenable to change

28. 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

29. 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!

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