Community-Based Participatory Research

1. Community-Based Participatory Research María Luisa Zúñiga, PhD Associate Professor Division of Global Public Health, Medicine Division of Child Development and Community Health, Pediatrics University of California, San Diego Fall 2011

2. Learning Objectives • Define Community-Based Participatory Research (CBPR) • Describe evidence of CBPR • Describe community data sharing activities

3. 1. Community-Based Participatory Research (CBPR)

4. Communities as Partners “Community-based participatory research is one approach that engages diverse partners in strategies aimed at obtaining multiple perspectives in order to address community-identified concerns” Minkler & Wallerstein, 2003

5. Community-based participatory research • Meaningful engagement of community partners • Equitable power structure - money & shared decision making • Includes data feedback • Long-term commitment • View as a process

6. Who should participate in CBPR?Who represents ‘the community’, Who represents academic researchers?Who are the “experts”?

7. Relevance of CBPR to research • Research activity is grounded in the realities of study participants—improves relevance of findings to the community • Improves our ability to measure more accurately—relevance of study questions • Opportunity to validate prior research findings

8. Benefits to researcher & community • Interdisciplinary • Diversity of perspectives and participation • Potential for capacity & skill building for all involved

9. The moment your are conceiving a CBPR study… • Invite a community partner to serve as a consultant or Co-Investigator on your grant • Experiences with partner agencies can provide profound learning experiences… • Benefits: • Broader dissemination of knowledge • Credibility

10. Planning for CBPR • Identify persons that are intimately familiar with the community • Examples: • Members of support or advocacy groups • Persons working in non-profit agencies • Clinic personnel and leadership • Be aware of: inter-group politics, agency or personal agendas or other factors that can negatively influence your work together

11. Sometimes it is not enough to have study team members who speak the language …

12. Planning for CBPR, cont. • Consider various approaches to engage different members of the community • Plan with community partners a way to give back data • Presentation to clinic staff, support group, simple flyer • Engaging prior to the work being done

13. CBPR during study implementation • Foster open, trusting lines of communication—don’t be shy about mapping out a communication diagram with partners • Frequent meetings • Be mindful of community perception e.g. study border population cautious of sharing sensitive information

14. Keeping your community engaged 1. Provide results and feedback to community members, think about how ahead of time 2. Have a good idea of the relative importance of the issue to the community 3. Be aware of which populations are likely to benefit 4. Describe anticipated benefits to the community 5. Work with community to determine next steps 6. Determine a sustainability plan with key community members

15. Community Data Sharing

16. CBPR during data analysis, interpretation & dissemination • Ask community and research team what they think is important to analyze (what do they want to know?) • Present ideas to get the ball rolling • Before a formal write-up, present findings to different groups to gain perspective and general consensus

17. CBPR during data analysis, interpretation & dissemination • Ask partners to summarize lessons learned about the study…genuinely great ideas come out of this process.

18. Sample of a community feedback document

19. Dissemination of findings • Gauge community partner interest in writing a manuscript • Be very clear about expectations of co-authorship • Importance of Community Acknowledgement

20. Vaya con la gente. Viva con ellos, Aprenda de ellos, Amelos. Comience con lo quesaben, construya con lo quetengan. Y con los mejoreslíderes, cuando se ha terminado el trabajo, la tareaconcluida, la Gentedirá: “Nosotrosmismos lo logramos” Lao Tzu. China, 700 B.C.

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22. Research ethics in the context of CBPR

23. Primary principles of ethics in research: Also good ideas to keep in mind when engaging community members 1. Respect for persons • Autonomy and protection of persons w/ diminished autonomy • Free power of choice; consent (voluntary & informed) • Sufficient knowledge & ability to comprehend nature, duration & purpose of research 2. Beneficense • Respect for decisions; protect from harm; secure well-being 3. Justice • Who benefits from research; fairness in distribution; who bears burden References: Annas GJ (2009); Nuremburg Code (1947); National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research 1979 (Belmont Report 1976--U.S. funded research)

24. Protection of participants • Approval of all research protocols required PRIOR to initiating work • Recruitment protocols, consent forms and survey measures • Community & other institutional IRBs • Field staff and investigators should complete Ethics and Human Subjects trainings

25. Researcher obligations • Consider potential for increasing vulnerability or visibility of study population • Questions (may go undetected by IRBs who are unfamiliar with specific vulnerabilities of some groups) • Biomarker data • Immigration status • Potential for funding loss for clinic for non-residents • Unintended consequences (cause undue fear among study population)

26. You get invited back You can invite yourself back Community members come to you for continued feedback and advice You can go to community members for continued feedback and advice Figuring out if you got it right…..

27. Go to the People. Live with them, Learn from them, Love them. Start with what they know, Build with what they have. But with the best leaders, When the work is done, The task accomplished, The people will say: “We have done this Ourselves” Lao Tzu. China, 700 B.C.

28. University of California San Diego Patronato Pro - COMUSIDA Tijuana, A.C. County of San Diego, Health and Human Services Agency Public Health Services Agradecimientos • TIES Program: US-Mexico Training, Internship, Exchange, Scholarships(Sponsored by USAID) • El Cuete Project Staff and Co-Investigators • Funding by NIDA (DA09227-S11, DA019829); USAID (GSM-025); NIMH (5K01MH072353) • CFAR Developmental Grant Funding