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Moving Beyond Rhetoric: Knowledge, Power & Social Change

through Community-based Research

ACT research DayMay 7, 2009

Josephine Pui-Hing WongCommittee of Accessible AIDS Treatment

& University of Toronto

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Community-based Research in Health(CBR)

Mainstreaming?Buzzing rhetoric?Empowerment?

WHY TALK ABOUT IT?

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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

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

Community

Research

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UnpackingThe notion of ‘community’?

COMMUNITYsymbolic political

relational

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Community as ‘Symbolic’

The notion of ‘community’:

is general & imprecise

it gives way to our imaginations

it constructs meanings

it creates identities

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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

Community as ‘Relational’

CONTEXTS

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Unpacking the notion of ‘research’:

Rhetoric or Truth?

“Knowledge is power.”

“Programs & services must be based on evidence.”

“Research informs policy.”

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’.

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Doing Research: A Question of Paradigms1. Our basic beliefs about the nature of

reality: What is ‘truth’? What can we know about ‘reality’ or ‘truth’?

2. 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 the values, beliefs & interests of your

‘community’?

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Social Research in HIV/AIDS: Tension in Paradigms

Positivistic ParadigmIndividuals have

autonomous choicesReality 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

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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?

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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

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Critical Community-based ResearchCCBR

LOOKING TOGETHERFROM ABOVE; FROM WITHIN;

LOOKING IN FROM THE OUTSIDE;LOOKING OUT FROM THE INSIDE.

• Researchers • Service providers

• Community stakeholders & members

• Policy makers

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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’.

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Research as a Political Process:Struggles for limited resources & legitimacy

State

Academia

Activists

Research

PHAs, youth, LGBTTTQ, etc.

vv

vvvv

vv

knowledge

evidence

vv legitimacy& resourcesvvvv

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CCRB as a Social ProcessDialogue 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

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

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Transformation Through Collective Action: Best Practices in Migration, HIV and Mental Health Project

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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 Health2007-8: 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).

CCBR Research & KTE in Action:

1. SharingLife

Experience

2. CapacityBuilding

3. ReportComponents 1&2

Research Findings

4. ConceptMapping I:Generate

Statements

5. ConceptMapping II:

RankingStatements

6. ConceptMapping III:

Interpretation

7. Best PracticesFramework

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• 22 IRN-PHAs• 6 research

team members

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Producing & sharing knowledge is NOT a new phenomenon …

Who should tell the stories & how?

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Knowledge Translation & Exchange (KTE) -Transformation Through Collective Action

• 5 IRN-PHA RA• 15 KTE Ambassadors

• service provider/researcher team

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CCBR as a Spiritual ProcessPlanting a seed for contemplation

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self-transcendence

connectedness

compassion forself & others

commitmentfor peace &

social justice

self-transcendence

connectedness

compassion for self & others

commitmentfor peace &

social justice

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• partnerships• collaboration• capacity-building• collective action

• self-reflexivity

• peer support

• advocacy• dialogue

• reveal & critique inequity & injustice

From “Lost in Translation” to “Flourished through Translation”.

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Engage in Community

ConsultationParticipate in

Research

Co-investigate evidence,Co-develop best practice

recommendations

TranslateKnowledge

to Action

KTE as an organic process through meaningful ‘community’ and PHA participation in every step of research

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