Keynote at Heller School, Brandeis University

1. The Mainstreaming of Participatory Research in Health Care Gonzalo Bacigalupe, EdD, MPH Associate Professor University of Massachusetts Boston gonzalo.bacigalupe@umb.edu & Ikerbasque Research Professor University of Deusto, Bilbao http://bacigalupe.wordpress.com

2. Why do we do/need research? 2

3. Why do we do/need research? 3

4. 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) 4

5. 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 5

6. 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 6

7. 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 7

8. 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) 8

9. Partnerships 9

10. PAR Definition A group, community, or network jointly: Diagnose a situation Works towards improving it Evaluate effectiveness Critically reflect 10

11. 11

12. 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) 12

13. Nina Wallerstein 13 http://www.youtube.com/watch?v=mJnWmL3YeIA

14. The Action Research Dimension 14

15. PAR Cycle (s) 15

16. Whitehead, D. (2005). Project management and action research: two sides of the same coin? Journal of Health Organization and Management, 19, 519-531. 16

17. History 17 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 FalsBorda (1959) in Colombia dominant knowledge (science) Reproduces status quo emergent knowledge (alternative/resistant) Transform

18. 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) 18

19. PAR in Latin America 19 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 Montero De Witt, T., & Gianotten, V. (1988). Investigacion participativa en America Latina. Mexico DF: CENAPRO

20. 1984-1986 20

21. Anglo DiscoveriesandMemories 21 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

22. 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. 22

23. VOYCE 23

24. 24

25. CBPR & Health Disparities 25 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)

26. The Benefits according to AHQR 26 Done 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.

27. 27 Critical elements in CBPR (AHQR) http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=hserta&part=A148846&rendertype=table&id=A148983

28. AssAssessing the Evi 28 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.

29. Distributive & Procedural Justice 29 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.

30. 30 Literacy for Environmental Justice http://www.youtube.com/watch?v=G4zEncKHKdA (April 2010)

31. CBPR Lessons: Addressing Health Disparities 31 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)

32. Challenges 32 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

33. The Participation Continuum 33

34. What can academic types do? 34 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

35. The Mainstreaming of Participatory Research in Health Care Gonzalo Bacigalupe, EdD, MPH Associate Professor University of Massachusetts Boston gonzalo.bacigalupe@umb.edu & Ikerbasque Research Professor University of Deusto, Bilbao http://bacigalupe.wordpress.com

36. 36 gonzalo.bacigalupe@umb.edu