Transcript San Diego/Imperial Valley HIV/AIDS Border Health Project

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
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Learning Objectives
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Define Community-Based Participatory Research
(CBPR)
Describe evidence of CBPR
Describe community data sharing activities
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1. Community-Based
Participatory Research
(CBPR)
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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
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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

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Who should participate in CBPR?
Who represents ‘the community’,
Who represents academic
researchers?
Who are the “experts”?
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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

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Benefits to researcher & community
Interdisciplinary
 Diversity of perspectives and
participation
 Potential for capacity & skill building for
all involved

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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
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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
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Sometimes it is not enough to have study
team members who speak the language …
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Planning for CBPR, cont.

Consider various approaches to engage
different members of the community
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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
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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
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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
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Community Data Sharing
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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
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CBPR during data analysis,
interpretation & 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
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Dissemination of findings
Gauge community partner interest in writing
a manuscript
 Be very clear about expectations of coauthorship
 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.
fin
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Research ethics in the
context of CBPR
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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)
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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
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Researcher obligations
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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)
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FIGURING OUT IF YOU
GOT IT RIGHT…..
•
•
•
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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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Agradecimientos
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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 Agency
Public Health Services
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