1. Building Partnerships: Empowerment & Change through Community-Based Participatory Research (CBPR) Tracy Schroepfer, PhD, MSW, MA University of Wisconsin-Madison School of Social Work

2. Agenda  Issue  Model Description  Important Considerations

3. Issue

4. Wisconsin Cancer Disparities  African American males have higher rates of prostate cancer than whites & die at twice the rate  African American women less likely to get breast cancer than white women, but more likely to die  American Indian men more likely diagnosed with colorectal cancer than any group  Asian American women have highest rates of cervical cancer of any group

5. WI Comprehensive Cancer Control Plan  Acknowledges problems exposed by presence of disparate cancer burden in WI  Seeks to “ensure that priorities and strategies developed in the plan work to eliminate health disparities”

6. Model Description

7. Research Model Needed  Recognition issue cuts across traditional boundaries  Requires collaborations with communities  Need for research model that:  Is replicable  Sensitive to unique culture and climate of each community  Adopts a holistic approach

8. Challenges for Minority Communities  Lack resources  May not be many community members conducting research  Researchers already have set agenda, not necessarily compatible with community’s needs

9. Community Based Participatory Research (CBPR) Principles  Collaborative, partnership approach  Joint involvement in process  Partners contribute expertise  Share responsibilities & ownership  Increase understanding of issue  Local community capacity building  Empowering process  Balance between research and action

10. Reporting & Action

11. Step 1: Relationship Building

12. Components of Process  Travel to community & present project  Community defines its boundaries  Memorandum of Understanding (MOU) developed  Community funds distributed  Young community members actively engaged in the project

13. Pilot Communities  Sankofa Project  WI Coalition of Mutual Assistance Assoc  Latino Health Council of Dane County  Gerald Ignace Health Center Milwaukee  Scenic Bluffs Community Health Clinics

14. New Communities  Lac Courte Oreilles Band of Lake Superior Chippewa  Bad River Band of Lake Superior Chippewa  Red Cliff Band of Lake Superior Chippewa  Sixteenth Street Community Health Center  Amish Community (in process)

15. Step 2: Assessing Community Readiness

16. Components of Process  Purpose: Measures degree community is ready to address cancer health disparities  Instrument: Community Readiness Assessment (CRA) developed by Colorado State University’s Tri-Ethnic Center for Prevention Research  6-10 community leaders interviewed  Young professional community members trained to conduct interviews

17. Six Dimensions  Community efforts to address cancer  Community knowledge of efforts  Leadership  Community Climate  Knowledge of the Issue  Resources for prevention efforts  Cultural beliefs, values & perceptions

18. Stages of Community Readiness 9. High Level of Community Ownership 9. High Level of Community Ownership 4. Preplanning 5. Preparation 6. Initiation 8. Confirmation/Expansion 7. Stabilization 3. Vague Awareness 2. Denial / Resistance 1. No Awareness

19. Stage 2: Denial & Resistance  Some community members recognize it is a concern, but little recognition it might be occurring locally.  Goal: Raise awareness the problem or issue exists in this community.  Intervention Possibilities:  Approach and engage local educational & health outreach programs to assist in the effort with flyers, posters, or brochures.  Prepare and submit articles for church bulletins, local & club newsletters, etc.  Present information to community groups.

20. Step 3: Analysis & Readiness Report

21. Preliminary Results  Communities score low on readiness scale  Cultural beliefs, values & perceptions play an important role  Communities possess strengths  Interventions: thinking out of the box

22. Step 4: Assessing the Quality of Cancer Care

23. Components of Process  Purpose: Gain understanding of, and knowledge about, cancer treatment experiences of individuals from medically underserved communities  Interview 75 community members who have either had cancer, currently have cancer, or have a terminal cancer diagnosis

24. Areas Being Assessed  Demographics  Cancer Diagnosis & Screening  Cancer Specialist & Treatment  Social Support  Patient-Physician Relationship  End-of-Life Issues & Care

25. Data Collection  Survey development  Translation of all surveys  Development of referral sources

26. Important Considerations

27. Process Considerations  Funding  Identifying the community  Equitable involvement in research and analysis  Sharing, ownership, and use of findings for action

28.  Building trust and respect  Insider-outsider tensions  Differences in values, priorities, perspectives, assumptions, beliefs and language  Community is ever evolving  Time-consuming process Relationship Considerations