310 likes | 593 Views
E N D
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 worldthe 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
Hecklers 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 Scholars 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 isnt
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. Dont 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 theyre federal institutions , federal policy, education, health, or research institutions
after we get finished through high school, then we commit to another institution
Were 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 tribes multi-million dollar lawsuit against the Arizona State University for non-consenting use of blood samples) (Potkonjak, 2004). ., the Havasupai tribes 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