Integrating Capacity Building into Collaborative CommunityBased Research: the Case of a Research Con

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Integrating Capacity Building into Collaborative
Community-Based Research the Case of a Research
Consortium Focused on Asian and Pacific Islander
MSM Communities

• Christian Alvez
• Asian and Pacific Islander American Health Forum
• Tri Do
• UCSF Center for AIDS Prevention Studies
• 2006 CAPS Conference

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Overview

• WELCOME INTRODUCTION
• Lead-in questions
• What is the MATH study?
• REFLECTION / DISCUSSION
• MATH CONSORTIUM AND CAPACITY BUILDING
• COMMUNITY BUILDING THROUGH RESEARCH
• CLOSING EVALUATION

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Objectives

• At the end of this workshop, attendees will be
  highly conversant in
  
• Exploring the benefits and challenges of
  collaborating in community-academic research
  partnerships,
  
• Describing a consortium model of collaborative
  research, and
  
• Explaining how capacity building activities serve
  to facilitate the research while the
  strengthening community.

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Men of Asia the PacificTesting for HIV

• The History, Anatomy, and
• Physiology of MATH

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Acknowledgements
Our Community Partners AIDS Services in Asian Co
mmunities (Philadelphia) Asian Americans for Comm
unity Involvement (Santa Clara)
Asian Health Services (Oakland)
Asian Pacific AIDS Intervention Team (Los
Angeles) Asian Pacific Islander Coalition on HI
V/AIDS (New York City) Asian Pacific Islander W
ellness Center (San Francisco)
Massachusetts Asians Pacific Islanders for
Health (Boston)

• API HIV/AIDS Advocates
• MATH team Vince Crisostomo, Tri Do, Jordana De
  Leon, Royce Park, Mary Hoehn, Susan Eisenberg,
  Frank Wong.
  
• MATH Consortium Convener Asian and Pacific
  Islander American Health Forum
  
• ManChui Leung, Christian Alvez
• Scientific Partners John Chin, Willi McFarland,
  Kyung-Hee Choi, Teri Liegler
  
• Funder
• National Institutes of Health, NICHHD

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Guiding Questions

• Why study HIV among API MSM? What impact on the
  epidemic can social epidemiological research
  have?
  
• How does such research benefit the community?
  How does involvement of the community benefit the
  research?
  
• What is needed to make the collaboration
  successful and significant?

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History Queer API Organizing

• Homophobia, racism, anti-immigrant stigma in U.S.
  society, API society, and in the LGBT community
  
• Triple politics of invisibility
• Internalized messages about model minority
  status
  
• Lack of specific HIV prevention services
• Trajectory of a community response

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AIDS among APIs in the U.S.

• Relatively smaller number of AIDS cases in the
  U.S.
  
• 6,864 cumulative AIDS cases through 2002
• About 50 are living
• 0.76 of all U.S. AIDS cases, vs 4.2 of U.S.
  pop
  
• 87 of all APIs with AIDS are male
• High rates of rectal GC, syphilis, and risk
  behaviors (UAI with partners of unknown status)
  (McFarland, et al 2004)
  

Source CDC, HIV/AIDS Surveillance Supplemental
Report, 2003
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HIV/AIDS and API MSM

• HIV Prevalence Low? High? Rising?
• 1.4 to 27.8 of API MSM in smaller studies using
  convenience samples
  
• 2.6 in TLS study of 18-29 y.o. API MSM in SF in
  2001 (Choi 2004)
  
• 6.1 by self-report in SF, 2005 10
  seroprevalence in a sub-sample (n50) (SFDPH)
  
• Increased morbidity and hospitalizations due to
  lack of awareness of infection, lack of testing,
  low risk perception (Eckholdt 1997, Nemoto 2003,
  Do 2005)

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History of the MATH Study

• Much groundwork previously laid down by agencies,
  advocates, researchers
  
• 1996 API HIV Research Summit
• 2000 API MSM survey collaboration to ensure data
  uniformity across agencies
  
• 2001 MATH study conceptualized
• 2002 API SHARE Conference, meeting with agencies
• 2003 Proposal submitted to NICHD May not
  funded
  
• Met with agencies to discuss
• 2004 Revised, resubmitted Jan 2004.
• Scored well, funded for October 2004

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Benefits of a Community-Based Scientific Research
Approach

• Data, data, data
• Influencing public health funding and policy
• Relevance
• Development of novel, real time and highly
  relevant prevention approaches
  
• Highly appropriate and tailored services for API
  MSM
  
• Epidemic Impact
• Populations can be reached for prevention and
  testing who might not otherwise access these
  services
  

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Scientific and Community Research Priorities

• Methodological Rigor
• Outreach, sampling
• Biological outcomes
• Social and behavioral measures
• Assure quality of services, meet regulatory
  requirements
  
• Maintain high scientific standard
• Community Concerns
• Research must provide relevant and significant
  information
  
• Impact on agencies capacity to provide services
• It had to be successful and fundable!

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Specific Aims of MATH

• to estimate the prevalence and incidence of HIV
  infection among AAPI MSM
  
• to describe the socio-cultural and
  individual-level factors related to HIV testing
  and knowledge of HIV infection status among AAPI
  MSM
• to examine the socio-cultural and
  individual-level correlates of HIV risk among
  AAPI MSM and
  
• to evaluate a consortium model framework for
  conducting scientific, community-based HIV
  research.

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Current study design

• 2,000 API MSM in 5 metropolitan areas in
  partnership with 7 community based organizations
  (CHC/CBO)
  
• Over sampling of Chinese, Filipino, Japanese,
  South Asian, Vietnamese.
  
• Behavioral Survey in multiple languages
  Chinese, Vietnamese, Japanese, English
  
• Use of oral-based OraQuick Advance with
  blood-based confirmatory and other HIV-related
  tests
  
• Provide HIV testing, counseling, referrals

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Behavioral Survey

• Instrument Development, Translation, Testing
• Scientific Areas of Interest
• Demographics
• Cultural and Community Measures
• Acculturation and orthogonal phenomena
• Social Networks
• egocentric and network mapping
• Behavioral Risk, Risk Reduction, and Resiliency
• Psychological and Physical Health
• Questions posed by service providers, CAB members

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Biological Measures

• Rapid HIV Test
• Confirmatory HIV Test (blood-based)
• CD4 Count (HIV stage)
• HIV Incidence (BED Assay)
• HIV Viral Load
• HIV Genotype
• HIV Clade (subtype)

To be disclosed to participant
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Computerized Protocol Procedures

• Standard venue/online/media-based recruitment,
  and reach difficult-to-reach persons through
  respondent-driven sampling technique
  
• Following up on RDS procedures
• Eligibility screening, informed consent
• HIV pretest counseling, HIV testing
• Follow-up with blood-based confirmatory testing,
  conducted by partner laboratories nationwide
  
• Follow-up visits with preliminary positive /
  indeterminate
  
• Administer a behavioral survey instrument
  focusing on risk behaviors, API-specific cultural
  factors, resiliency, and emerging issues (e.g.
  travel)
• Study administration (financial, documentation,
  etc)

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Quality Assurance

• Quality Assurance Activities
• Documentation of compliance with state
  regulations
  
• Environmental QA program
• Rapid HIV Testing QA program
• Control Testing Schedule
• Performance evaluation programs
• Specimen collection and shipment
• Project Activity Documentation, Monitoring
• Quarterly, Annual, and Adverse Event Reports

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Changes from Original Protocol

• Oversampled ethnic groups changed (from Korean to
  South Asian)
  
• Languages changed (Japanese added)
• Sample size decreased
• Number of community partners and metropolitan
  areas changed
  
• Fingerstick ? oral specimen collection

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Progress / Next Steps

• Complete pilot testing, start data collection
• Ongoing capacity building
• Assessment of the Consortium effectiveness
• Analysis, reporting Dissemination
• Scientific manuscripts, community forums
• Scientific service-oriented conferences
• In the future
• Hepatitis B testing
• Intervention Development
• Infinite possibilities

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Capacity Building within Community-Based
Collaborative Research
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What is Capacity Building?

• Capacity building is a dynamic and informative
  process that emphasizes the empowerment of
  individuals, organizations, and communities and
  the improved use of skills

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What is Capacity Building

• For example, capacity building can be described
  as a planned structured sequence of events or
  activities that may include training,
  consultation, technical assistance, and/or
  mentoring activities

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What is Capacity Building

• The intended outcome of CBA is to help
  individuals, organizations, and communities build
  and enhance skills to function more effectively
  or be better prepared for future programmatic
  challenges.
• -Centers for Disease Control and Prevention

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Capacity Building Services

• Managing the provision of Capacity Building
  Assistance (CBA) services within research
  
• Budgeting, planning
• Consortium convener
• Training Technical Assistance
• Group trainings
• One-on-one site visits
• Technical Consultation
• Formal and ongoing needs assessments
• Coaching
• Providing Resources

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Capacity Building Activities

• HIV testing capacity assistance
• Certification, training
• Technical assistance
• Phlebotomy, linkage to laboratories
• Quality assurance, regulatory compliance
• Research capacity
• IRB training, NIH requirements
• Protocol implementation

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Capacity Building Activities

• HIV Prevention Program Capacity
• Language capacity
• Funding, grants
• Referrals, linkages
• Overall outreach strategies
• Online
• Venue-based
• Respondent-driven
• Ethnic group specific
• Community Advisory Board training
• How to read a research protocol
• Guidance on participating on a national CAB

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Successes

• Influencing local data collection.
• Influencing HIV testing funding priorities.
• Strengthening CBO infrastructure and
  sustainability.
  
• Increase of staff skills.
• Working relationships with other capacity
  building partners.
  
• Increase in quality assurance.
• Complementing CBOs existing programs.
• Changing agencies views of research and
  evaluation methodologies.

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Challenges to Date

• State requirements
• Lab linkages
• Changing hats Direct service to research
• Translation/Interpretation

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Community Concerns

• Deliverables
• Language and outreach capacities vary between
  agencies
  
• Flexibility around recruitment targets (e.g. by
  ethnicity)
  
• Changing testing/research capacity with staffing
• Reaching Ethnic composition
• Integration into existing HIV testing services
• Ethical concerns
• Confidentiality in RDS
• Literacy level, availability of audio survey
• Difficulty reaching population homophobia in API
  communities, racism in gay community

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Scientific Concerns

• Will changing the target ethnicities make the
  results less generalizable to API MSM in
  general?
  
• Is the inclusion of South Asian as a group (vs.
  the more monolithic ethnic groups) valid?
  
• Will the integration of MATH into existing HIV
  testing programs invalidate the data through
  biased sampling?

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MATH Study Acknowledgements
Our Community Partners AIDS Services in Asian Co
mmunities (Philadelphia) Asian Americans for Comm
unity Involvement (Santa Clara)
Asian Health Services (Oakland)
Asian Pacific AIDS Intervention Team (Los
Angeles) Asian Pacific Islander Coalition on HI
V/AIDS (New York City) Asian Pacific Islander W
ellness Center (San Francisco)
Massachusetts Asians Pacific Islanders for
Health (Boston)

• API HIV/AIDS Advocates
• MATH team Vince Crisostomo, Tri Do, Jordana De
  Leon, Royce Park, Mary Hoehn, Susan Eisenberg,
  Frank Wong.
  
• MATH Consortium Convener Asian and Pacific
  Islander American Health Forum
  
• ManChui Leung, Christian Alvez
• Scientific Partners John Chin, Willi McFarland,
  Kyung-Hee Choi, Teri Liegler
  
• Funder
• National Institutes of Health, NICHHD

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