1 Community-Based Participatory Research María Luisa Zúñiga, PhD Associate Professor Division of Global Public Health, Medicine Division of Child Development.

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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

Learning ObjectivesLearning Objectives

Define Community-Based Participatory Research (CBPR)

Describe evidence of CBPR Describe community data sharing activities

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

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Communities as PartnersCommunities 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

Community-based Community-based participatory researchparticipatory researchMeaningful engagement of community partnersEquitable power structure

- money & shared decision makingIncludes data feedbackLong-term commitmentView as a process

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Who should participate in Who should participate in CBPR?CBPR?

Who represents ‘the Who represents ‘the community’, Who community’, Who represents academic represents academic researchers?researchers?Who are the “experts”?Who are the “experts”?

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Relevance of CBPR to Relevance of CBPR to researchresearch

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

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Benefits to researcher & communityBenefits to researcher & community

InterdisciplinaryDiversity of perspectives and participation

Potential for capacity & skill building for all involved

The moment your are The moment your are conceiving a CBPR study…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 knowledgeCredibility

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Planning for CBPRPlanning for CBPRIdentify 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

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

Planning for CBPR, cont.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 flyerEngaging prior to the work being

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CBPR during study CBPR during study implementationimplementation

Foster open, trusting lines of communication—don’t be shy about mapping out a communication diagram with partners

Frequent meetingsBe mindful of community perception

e.g. study border population cautious of sharing sensitive information

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Keeping your community engagedKeeping 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 14

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Community Data SharingCommunity Data Sharing

CBPR during data analysis, CBPR during data analysis, interpretation & disseminationinterpretation & 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

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CBPR during data analysis, CBPR during data analysis, interpretation & disseminationinterpretation & dissemination

Ask partners to summarize lessons learned about the study…genuinely great ideas come out of this process.

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Sample of a community feedback document

Dissemination of findingsDissemination of findings

Gauge community partner interest in writing a manuscript

Be very clear about expectations of co-authorship

Importance of Community Acknowledgement

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Vaya con la gente. Viva con ellos, Aprenda de ellos, Amelos.

Comience con lo que saben, construya con lo que tengan.

Y con los mejores líderes, cuando se ha terminado el trabajo,

la tarea concluida, la Gente dirá:

“Nosotros mismos lo logramos”

Lao Tzu. China, 700 B.C.

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Research ethics in the Research ethics in the context of CBPR context of CBPR

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Primary principles of ethics in research: Primary principles of ethics in research: Also good ideas to keep in mind when Also good ideas to keep in mind when

engaging community membersengaging community members1. 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)

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Protection of participantsProtection of participantsApproval of all research protocols

required PRIOR to initiating work◦Recruitment protocols, consent forms

and survey measuresCommunity & other institutional

IRBsField staff and investigators should

complete Ethics and Human Subjects trainings

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Researcher obligationsResearcher obligationsConsider 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

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FIGURING OUT IF YOU FIGURING OUT IF YOU GOT IT RIGHT…..GOT IT RIGHT…..

• 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

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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.

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AgradecimientosAgradecimientos 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

University of California San Diego

Patronato Pro - COMUSIDA Tijuana, A.C.

County of San Diego,Health and Human Services AgencyPublic Health Services