Community Based Participatory Research and Sustainable Interventions: Strategies and Challenges

1. Community Based Participatory Research and Sustainable Interventions: Strategies and Challenges Nina Wallerstein, DrPH April 6, 2010 APTR Community Engagement Workshop

3. The purpose of education is human liberation, which �takes place to the extent that people reflect upon themselves and their condition in the world�the world in which and with which they find themselves� to the extent that they are more conscientizised, they will insert themselves as subjects into their own history.� To be a good educator (researcher) �means above all to have faith in people; to believe in the possibility that they can create and change things� (Freire, 1971). Paulo Freire Contributions

4. Existence of health disparities undisputed: health status, access to care, environmental conditions Top people live longer. They are healthier while doing so. Strong relationship between social status (SES) and health Strong relationship between racial/ethnic status and health Heckler�s 1985 DHHS Report on Black and Minority Health, Civil Rights Report, 1999; IOM Unequal Treatment, 2002; Healthy People 2010 Goal of Eliminating Racial and Ethnic Health Disparities Where are we in science of disparities?

5. �The real challenge lies not in debating whether disparities exist, but in developing and implementing strategies to reduce and eliminate them.� �IOM Committee Chair

6. Challenge of bringing evidence to practice Moving from efficacy to effectiveness trials Internal validity focus insufficient for translational research External validity: Contextualization/Implementation process Challenge of what is evidence Practice and Culturally-based Evidence/Indigenous theories, norms, practices Challenge of one-way translation orientation Assumes community tabula rasa Challenges for Bridging Science to Practice: Need for CBPR

7. CBPR Relevance & Institutional Support Increasing community and funder demands for community-driven research/collaboration IOM Report: Who will keep the public healthy? Educating PH Professionals for the 21st Century, 2002 OMH National Partnership for Action, Visionary Panel Recommendations for Health Disparities Plan, 2008 Special issues of Journals devoted to CBPR and new Partnerships Journal from Johns Hopkins CDC and increasing NIH Requests for Proposals CDC 13 million; 25 projects�. 560 letters of intent; urban research centers, new border research center $60 million annually (foundation and government; though billions in other NIH research) CDC 13 million; 25 projects�. 560 letters of intent; urban research centers, new border research center $60 million annually (foundation and government; though billions in other NIH research)

8. � Collaborative approach to research that equitably involves all partners in the research process and recognizes the unique strengths that each brings. CBPR begins with a research topic of importance to the community with the aim of combining knowledge and action for social change to improve community health and eliminate health disparities.� W.K. Kellogg Community Scholar�s Program (2001) CBPR Definition

9. CBPR is an orientation to research Changes the role of researcher and researched CBPR is not a method or set of methods Qualitative and quantitative Epidemiology and intervention research CBPR is an applied approach Goal is to influence change in community health, systems, programs, or policies What it is and What it isn�t

10. Recognizes community as unit of identify Cooperative Co-learning process Systems development & local capacity building Long term commitment Balances research and action Israel et al, 1998 and 2003 CBPR Principles

11. Don�t plan about us, without us All tribal systems shall be respected and honored, Tribal government review and approval prior to implementation Tribally specific data shall not be published without prior consultation; data belongs to tribe Core Values: trust, respect, self-determination, mutuality of interests, perspective taking, reciprocity Principles for Tribes

12. �capacity to endure���for humans, long-term maintenance of wellbeing, which depends on the wellbeing of the natural world� ��development that meets the needs of the present without compromising the ability of future generations to meet their own needs.� Bruntland Commission of the United Nations, March 20, 1987) As call to action/journey/political process, �a sustainable global society founded on respect for nature, universal human rights, economic justice, and a culture of peace.� Earth Charter Wikipedia, accessed, March 30, 2010 Where are we with Sustainability?

13. Maintain health benefits of program over time? Institutionalize programs or components within organization? Build community capacity? (Shediac-Rizkallah and Bone, 1998) Sustain partnership as organization ? vs. Sustain partnerships� values or initiatives? (Alexander et al) Cited in Israel et al, Journal of Urban Health, 2006 Multiple perspectives of sustainability

14. Institutionalization? Vs. Sustainability? �The role of institutions, whether they�re federal institutions , federal policy, education, health, or research institutions �� �after we get finished through high school, then we commit to another institution� We�re insane to go�dropouts are more sane than we are..the trauma of boarding schools is a federal policy issue.� Tribal Focus Group on CBPR Model, 2009 Need to Watch Our Language

16. Challenges in researcher-community relationships Nuances of participation Power and privilege: Who sets the research agenda? Historical and current research abuse/racism Specific university and research team reputation and community relationship Challenge of research team having necessary skills and values (cultural humility, listening, patience) Challenge of individual vs. community benefit Challenge of needs of academics (publishing) vs. community (immediate actions)

17. Example: University-Driven to Shared Model Multi-site CDC study on Community Capacity in minority communities: 1999-2003 UNM initiated with 2 tribes Participatory instrument development, data collection, analysis, Produced community and cultural voices reports Family Listening Project: NARCH III: 2004-09 Tribal Request from Community Capacities Project: Work with two Southwest tribes to co-develop culturally-based elder/ family/child prevention to reduce alcohol onset and abuse Adapt evidence-based Anishinabe curriculum

18. Family Listening Project Welcoming Family Dinner Our Tribal History Our Tribal Way of Life Our Tribal Vision Community Challenges Communication & Help Seeking Recognizing Types of Anger Managing Anger Problem Solving Being Different Positive Relationships Building Social Support Making a Commitment

19. NARCH V Grant (2009-2013) Purpose: To identify facilitators and barriers to effective CBPR across diverse populations and settings, and to advance the science of CBPR to reduce health disparities Partners: National Congress of American Indians Policy Research Center (S. Hicks as PI) University of Washington (B. Duran, co-PI) University of New Mexico (N. Wallerstein, co-PI) Funding: Pilot (2006-2009): NCMHD Current: NIGMS, NIDA, NCRR, OBSSR (with Indian Health Service)

20. Specific Aims: 1. Describe the variability of CBPR characteristics across dimensions in the CBPR conceptual model to identify differences and commonalities of CBPR processes and outcomes across partnerships 2. Describe and assess the impact of governance across AI/AN and other communities of color.

21. 3. Examine associations among group dynamic processes and CBPR outcomes: culturally-responsive and centered interventions; strengthened research infrastructure and other community capacities; health-enhancing policies and practices, under varying conditions and contexts. 4. Identify promising practices, assessment tools, and future research needs for the field of CBPR

23. Multi-Year Study Design Create CBPR Process on all Levels of Grant: Scientific Community Advisory Committee Scientific Subcommittees Virtual Community of Practice of CBPR Sites Define Universe of CBPR Projects/Sampling Design Develop Case Studies (Sampling Design for 8 Partnerships representing diversity) Internet Survey Instrument Design for up to 400 sites with key informant interviews to verify data

25. Benefits of CBPR Enhances community relevance of research questions Strengthens interventions within cultural and local context Enhances reliability/validity of measurement tools Improves response rates/recruitment & retention Increases accurate and culturally sensitive interpretation of findings Increases translation of evidence-based research into sustainable community change Facilitates effective dissemination of findings to impact public health and policy Increases research trust

26. Recommendations for Research Seek knowledge based on hybridity: Integrate Knowledge from both Academic Evidence and Cultural/Community Evidence Build on Community Strengths Build New Theories of Change Pay attention to external validity and context of implementation/sustainability Incorporate research on CBPR participatory processes/evaluation of partnerships Pay attention to mutual benefits

27. Recommendations to Transform Research Academic Culture Expand to Community Engaged Scholarship Develop tenure/promotion criteria on practice Build CBPR/Community Engagement Centers Establish institutional indicators for culturally centered support for faculty of color Build Diverse Teams: to reflect ethnicity/culture of communities Protect Junior Faculty of Color Limit burden of committee work Recognize burden to �represent� communities Recognize difficulty of CBPR publication of data in short time frame for tenure and promotion ., the Havasupai tribe�s multi-million dollar lawsuit against the Arizona State University for non-consenting use of blood samples) (Potkonjak, 2004). ., the Havasupai tribe�s multi-million dollar lawsuit against the Arizona State University for non-consenting use of blood samples) (Potkonjak, 2004).

28. Recommendations to Assure Community Benefit Promote Community Capacity in Research Human Capital/Skill Building/Education Change Power Relations: data ownership, place research money in communities Create Shared Analysis and Reporting Not �ventriloquism,� but multiple spaces so the lived experience of our partners can be heard and validated (Spivak 1990). For Academics: Return to core CBPR principles: Show up; Be who you are; Listen; Social Justice (Northridge, 2003)

29. Recommendations on Our Role: Cultural Humility Be Self-Reflective of Own Location: gender, age, race/ethnicity, sexual orientation, education, positions of power and privilege �A life long commitment to self evaluation and self critique� to redress power imbalances and �develop and maintain respectful and dynamic partnerships with communities� Tervalon & Garcia, 1998

30. Recommendations on Sustainability (Israel et al, 2006): (1) sustain relationships and commitments among the partners involved (2) sustain knowledge, capacity and values generated from the partnership (3) sustain funding, staff, programs, policy changes and partnership itself Questions Remain: How address Cultural Humility? Power? Racism? Privileged knowledge? Transformation of both University and communities? Challenge Today

31. Resources for further CBPR considerations Visit �Community-Campus Partnerships for Health� website: http://depts.washington.edu/ccph/commbas.html Agency for Healthcare Research and Quality (AHRQ) Community-Based Participatory Research Conference Summary, Nov 2001. View at: http://www.ahcpr.gov/about/cpcr/cbpr/cbpr1.htm#purpose Minkler and Wallerstein, Community Based Participatory Research for Health, 2008, San Francisco, Jossey-Bass. Israel, Eng, Schulz, Parker, Methods in Community Based Participatory Research for Health, 2005, S.F. Jossey-Bass. Reason & Bradbury, Handbook of Action Research, 2007, Sage Special Issues of Journals (e.g., American Journal of Public Health, Environmental Health Perspectives, J.of General Internal Medicine, etc.) Funding: Cross-NIH Program Announcements, Foundations, CDC