THE MAINSTREAMING OF PARTICIPATORY RESEARCH IN HEALTH CARE

Gonzalo Bacigalupe, EdD, MPHAssociate Professor

University of Massachusetts Boston

gonzalo.bacigalupe@umb.edu&

Ikerbasque Research Professor

University of Deusto, Bilbao

http://bacigalupe.wordpress.com

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Why do we do/need research?

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Why do we do/need research?

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Why do we do/need research?

“Common sense” is not enough Gathering Information (for decision-

making) Advancing knowledge To resolve specific problems To account for and learn from our

practices (Reflexive-Action)

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The Taken for Granted

Wadsworth, Y.  (1998) What is Participatory Action Research? Action Research International, Paper 2.  www.scu.edu.au/schools/gcm/ar/ari/p-ywadsworth98.html

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Instead… in PAR

Wadsworth, Y.  (1998) What is Participatory Action Research? Action Research International, Paper 2.  www.scu.edu.au/schools/gcm/ar/ari/p-ywadsworth98.html

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Note:

All science involves cyclical processes Who drives the process/content? Someone reflects and concludes Inquiry leads somewhere

It’s inevitable: researchers are value-driven

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Why do we do/need research?

“Common sense” is not enough Gathering Information (for decision-making) Advancing knowledge To resolve specific problems To account for and learn from our practices (Reflexive-Action)

What’s missing in this equation? )

(p + e + J)

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Partnerships

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PAR Definition

A group, community, or network jointly: Diagnose a situation Works towards improving it Evaluate effectiveness Critically reflect

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PAR Definition

A group, community, or network jointly: Diagnose a situation Works towards improving it Evaluate effectiveness Critically reflect

Participation is Key (period)It is action which is researched, changed and re-researched, within the research process by participants. (Wadsworth, 1998)

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Nina Wallerstein

http://www.youtube.com/watch?v=mJnWmL3YeIA

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The Action Research Dimension

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PAR Cycle (s)

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Whitehead, D. (2005). Project management and action research: two sides of the same coin? Journal of Health Organization and Management, 19, 519-531.

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History

Action-Research (AR) Lewin 1940s Study things to change them

PAR begins in L.A. late 1950s - 1960s, 1970s and on

Franz Fanon (1960s): Trauma/Inersectionality Fals Borda (1959) in Colombia

dominant knowledge (science) Reproduces status quo

emergent knowledge (alternative/resistant) Transform

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Paulo Freire

Participatory Research is an intrinsic piece in Popular Education (1970s)

Guided by principles of Liberation and Transformation Acknowledges that all human beings are capable of

knowledge PR challenges belief that research should be

conducted only by specialists; research should be part of everyone's life

Praxis: The philosophers have only interpreted the world, in

various ways; the point is to change it. Karl Marx (1845), Theses on Feuerbach (Thesis XI)

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PAR in Latin America

Participants (the “subjects”) …. Research problem Define; Analyze; Resolve

Goal of Research: to transform social reality It’s a permanent process of research and

action It’s part of an educational experience

Aids in accessing needs Consciousness raising

Collective organization is core Note: Ignacio Martin-Baro & Maritza MonteroDe Witt, T., & Gianotten, V. (1988). Investigacion participativa en America Latina. Mexico DF:

CENAPRO

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1984-1986

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Anglo Discoveries and Memories Peter Reason (AR/PAR Seminal Book) Michelle Fine (youth empowerment/intersectionality)

(and many in the world of social and critical psychology) Brinton Lykes (trauma/voice)

but (because some of us are not so “grounded” and don’t write in the dominant lingua franca)

Core is part of postcolonial developments in Asia and Africa and of transformative efforts in Latin America

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PAR Example

VOYCE

Youth-led project with high school students using PAR

Addresses drop out rate in Public High Schools

7 different community organizations Chicago area.

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VOYCE

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CBPR & Health Disparities

CBPR is not a research method but an orientation to research that emphasizes ‘‘equitable’’ engagement of all partners throughout the research process, from problem definition through data collection and analysis to the dissemination and use of findings to help affect change. Minkler (2010, p. S81)

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The Benefits according to AHQRDone properly, CBPR should benefit community participants, practitioners, and researchers alike. CBPR creates bridges between scientists and communities, allowing both to gain in knowledge and experience. This collaboration assists in developing culturally appropriate measurement instruments, thus making projects more effective and efficient.

Finally, CBPR establishes a level of trust that enhances both the quantity and the quality of data collected. The ultimate benefit is the prospect of examining the community's own unique circumstances to test and adapt best practices to its own needs.

Viswanathan M, Ammerman A, Eng E, Gartlehner G, Lohr KN, Griffith D, Rhodes S, Samuel-Hodge C, Maty S, Lux, L, Webb L, Sutton SF, Swinson T, Jackman A, Whitener L. Community-Based Participatory Research: Assessing the Evidence. Evidence Report/Technology Assessment No. 99 (Prepared by RTI—University of North Carolina Evidence-based Practice Center under Contract No. 290-02-0016). AHRQ Publication 04-E022-2. Rockville, MD: Agency for Healthcare Research and Quality. July 2004.

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http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=hserta&part=A148846&rendertype=table&id=A148983

Critical elements in CBPR (AHQR)

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AssAssessing the Evi

Viswanathan M, Ammerman A, Eng E, Gartlehner G, Lohr KN, Griffith D, Rhodes S, Samuel-Hodge C, Maty S, Lux, L, Webb L, Sutton SF, Swinson T, Jackman A, Whitener L. Community-Based Participatory Research: Assessing the Evidence. Evidence Report/Technology Assessment No. 99 (Prepared by RTI—University of North Carolina Evidence-based Practice Center under Contract No. 290-02-0016). AHRQ Publication 04-E022-2. Rockville, MD: AHRQ. July 2004.

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Dis

trib

uti

ve &

Pro

ced

ura

l Ju

stic

e

Minkler, M. (2010). Linking science and policy through community-based participatory research to study and address health disparities. American Journal of Public Health, 100 Suppl 1, S81-87.

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http://www.youtube.com/watch?v=G4zEncKHKdA (April 2010)

Literacy for Environmental Justice

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CBPR Lessons: Addressing Health Disparities

Policy changes and implementation require multiple stakeholders

CBPR processes may create more policy momentums and thus we need to evaluate them for their ability to improve this environment and/or for scaffolding.

Social technologies offer great opportunities for collaboration and all the requirements of organizing and researching (besides better ways of documenting)

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Challenges

PAR demands relationships and trust (real) Academic timing versus community’s Diverse policy needs among stakeholders Financial rewards:

equity, inequity, control funding venues create competition

Academic versus communities deliverables Data triangulation is key Mass media likes “single individuals” and not

communities to report success Collaborations exist in a gradient

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The P

art

icip

ati

on

Conti

nuum

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What can academic types do?

Learn knowledge/skills relevant to the task at hand

Develop relationships of solidarity Engage in actions that win victories &

build self-sufficiency

DOING RESEARCH IS NOT, IN ITSELF, A GOAL

Stoecker, R. (2008). Are academics irrelevant? Approaches and roles for scholars in CBPR. In M. Minkler & N. Wallerstein (Eds.), Community-based participatory research for health: From process to outcomes. New York, Joseey-Bass

THE MAINSTREAMING OF PARTICIPATORY RESEARCH IN HEALTH CARE

Gonzalo Bacigalupe, EdD, MPHAssociate Professor

University of Massachusetts Boston

gonzalo.bacigalupe@umb.edu&

Ikerbasque Research Professor

University of Deusto, Bilbao

http://bacigalupe.wordpress.com

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gonzalo.bacigalupe@umb.edu