Moving Beyond Rhetoric: Knowledge, Power & Social Change through Community-based Research

1. Moving Beyond Rhetoric:Knowledge, Power & Social Change through Community-based Research ACT research Day May 7, 2009 Josephine Pui-Hing Wong Committee of Accessible AIDS Treatment & University of Toronto

2. Community-based Research in Health(CBR) Mainstreaming? Buzzing rhetoric? Empowerment? WHY TALK ABOUT IT?

3. My basic assumptions: • Human actions are NOT entirely autonomous or totally conscious – we are autonomous within constraints • Power is exercised through ‘social relations’ and NOT held as a static entity • Social transformation to reduce human suffering and inequities is POSSIBLE • CRTICAL SOCIAL RESEARCH is one way to achieve emancipation and liberation

4. CBR: Community & Research – What’s the link? Community Research

5. UnpackingThe notion of ‘community’? symbolic political COMMUNITY relational

6. Community as ‘Symbolic’ The notion of ‘community’: • is general & imprecise • it gives way to our imaginations • it constructs meanings • it creates identities

7. Community as ‘Political’ The notion of ‘community’: • it constructs boundaries [insider /outsider] • ‘community’ vs. ‘government’ or ‘academia’, etc. • it defines similarities & differences • it functions as a ‘discourse’  policy & practice

8. Community as ‘Relational’ CON T E X T S

9. Unpacking the notion of ‘research’: Rhetoric or Truth? • “Knowledge is power.” • “Programs & services must be based on evidence.” • “Research informs policy.”

10. Research as ‘process’ & ‘outcome’ • The practical processes of CBR are similar to other community capacity building processes – partnerships, resources & power relations • Equitable and empowering partnership is dependent on ‘mutual’ understanding in all aspects of the process, including how to define: • research goals, topics, methods, application of results, ownership of ‘knowledge’.

11. Doing Research: A Question of Paradigms • Our basic beliefs about the nature of reality: • What is ‘truth’? • Whatcan we know about ‘reality’ or ‘truth’? • The relationship between the knower and what is known or knowable: • How can the knower find out what can be known? • What is the nature of knowledge? (Isreal et al., 1998) Does the chosen research paradigm reflect thevalues, beliefs & interests of your ‘community’?

12. Social Research in HIV/AIDS: Tension in Paradigms Positivistic Paradigm • Individuals have autonomouschoices • Reality is stable and can be generalized into cause & effects • Research as “neutral” assessment of what is true or untrue • Researchers as “objective” knowers not influenced by self-interests Critical-Social Paradigm • Individuals have choices within social constraints • Reality is shaped by historical & social power relations  unstable • Research is mediated by values & power • Researchers ‘reflexively’ apply theories & concepts to reveal “hidden” structures, ideologies & interests

13. Mainstreaming of CBR: Critical questions remain • Is the research community ‘based’ or community ‘placed’? • What is the role for ‘community’ stakeholders? • How are the power ‘relations’ within the research structured? • Whose interests are at the heart of the research?

14. The ABCs of Critical Community-based Research (CCBR) • Acknowledge power relations in society • Build on community strengths & equitable partnerships (GIPA & MIPA**) • Coherent paradigm & critique of social inequities & oppressions • Dialogical approach  participatory • Engage members in emancipatory action and collective empowerment

15. Critical Community-based ResearchCCBR • Researchers • Service providers • Community stakeholders & members • Policy makers LOOKING TOGETHER FROM ABOVE; FROM WITHIN; LOOKING IN FROM THE OUTSIDE; LOOKING OUT FROM THE INSIDE.

16. The Roots of CBR: Action & Emancipation • Kurt Lewin (1948) – Action Research • Paulo Freire (Brazil); Orlando Fals- Borda (Columbia); Rajesh Tandon (Asia) – Participatory Research -- emancipation In other word, its roots were ‘critical’.

17. Research as a Political Process:Struggles for limited resources & legitimacy State knowledge Academia evidence Research v v v legitimacy & resources Activists v v v v PHAs, youth, LGBTTTQ, etc.

18. CCRB as a Social Process • Dialogue  critical understanding of individual and collective conditions of existence • Reveal ‘hidden’ structures  sufferings of marginalized & oppressed groups • Reveal the ‘logic’ of social practice of both the dominant & the dominated groups • Identify and act on collective solutions – at individual, organizational & societal levels Knowledge translation & exchange (KTE) is an integrated component of CCBR

19. Empowerment through CCRB: an example Committee for Accessible AIDS Treatment (CAAT) • A coalition of 30 Ontario based organizations, formed in 1999 • Shared vision: health equity for marginalized PHAs • Goals: improve access through research-practice-policy integration CAAT - http://www.hivimmigration.ca/index.html

20. Transformation Through Collective Action: Best Practices in Migration, HIV and Mental Health Project • 2001: Action research on Access to HIV Treatment (funded by OHTN) • HIV Treatment Access Program (with PWA) • HIV & Immigration Service Access Training (with RPCHC) • Access to legal information on immigration (with HALCO) • research needs – mental health needs of IRN-PHAs • 2004: Pilot study with immigrant, refugee & non-status people living with HIV/AIDS (IRN-PHAs) & service providers (funded by OHTN) • research topic identified by IRN-PHAs & service providers • development of multi-component participatory action research 2005-7: Study on Best Practices in Migration, HIV and Mental Health 2007-8: Knowledge Translation & Exchange (KTE) Project (funded by OHTN & Wellesley Institute Current: Engaging Ethnoracial Faith-based, Media & Social Justice Leaders to reduce HIV related stigma & discrimination (funded by OHTN).

21. CCBR Research & KTE in Action: 3. Report Components 1&2 Research Findings 1. Sharing Life Experience 2. Capacity Building 4. Concept Mapping I: Generate Statements • 22 IRN-PHAs • 6 research team members 5. Concept Mapping II: Ranking Statements 6. Concept Mapping III: Interpretation 7. Best Practices Framework

22. Producing & sharing knowledge is NOT a new phenomenon … Who should tell the stories & how?

23. Knowledge Translation & Exchange (KTE) - Transformation Through Collective Action • 5 IRN-PHA RA • 15 KTE Ambassadors • service provider/researcher team

24. Planting a seed for contemplation CCBR as a Spiritual Process

25. self- transcendence compassion for self & others connectedness commitment for peace & social justice Some universal underpinnings of spirituality across all faiths & philosophies

26. Universal underpinnings of spirituality: compatible with CCBR principles self- transcendence compassion for self & others • advocacy • dialogue • self-reflexivity • peer support connectedness commitment for peace & social justice • partnerships • collaboration • capacity-building • collective action • reveal & critique inequity & injustice

27. From “Lost in Translation” to “Flourishedthrough Translation”. Engage in Community Consultation Participate in Research Co-investigate evidence, Co-develop best practice recommendations Translate Knowledge to Action KTE as an organic process through meaningful ‘community’ and PHA participation in every step of research

28. You have been a GREAT listener! Thank you. Josephine Think about how collectively we can change the world thru CCBR! CAAT .