Integrating Capacity Building Integrating Capacity Building into Collaborative Community-into Collaborative Community-

Based Research: Based Research: the Case of a Research Consortium Focused on the Case of a Research Consortium Focused on

Asian and Pacific Islander MSM CommunitiesAsian and Pacific Islander MSM Communities

Christian AlvezChristian AlvezAsian and Pacific Islander American Health ForumAsian and Pacific Islander American Health Forum

Tri DoTri DoUCSF Center for AIDS Prevention StudiesUCSF Center for AIDS Prevention Studies

2006 CAPS Conference2006 CAPS Conference

OverviewOverview

WELCOME & INTRODUCTIONWELCOME & INTRODUCTION– Lead-in questionsLead-in questions– What is the MATH study?What is the MATH study?

REFLECTION / DISCUSSIONREFLECTION / DISCUSSION

MATH CONSORTIUM AND CAPACITY BUILDINGMATH CONSORTIUM AND CAPACITY BUILDING

COMMUNITY BUILDING THROUGH RESEARCHCOMMUNITY BUILDING THROUGH RESEARCH

CLOSING & EVALUATIONCLOSING & EVALUATION

ObjectivesObjectives

At the end of this workshop, attendees will be At the end of this workshop, attendees will be highly conversant in:highly conversant in:

1.1. Exploring the benefits and challenges of Exploring the benefits and challenges of collaborating in community-academic research collaborating in community-academic research partnerships,partnerships,

2.2. Describing a consortium model of collaborative Describing a consortium model of collaborative research, andresearch, and

3.3. Explaining how capacity building activities serve to Explaining how capacity building activities serve to facilitate the research while the strengthening facilitate the research while the strengthening community.community.

Men of Asia & the PacificMen of Asia & the PacificTesting for HIVTesting for HIV

The History, Anatomy, and The History, Anatomy, and

Physiology of MATHPhysiology of MATH

AcknowledgementsAcknowledgementsAPI HIV/AIDS AdvocatesAPI HIV/AIDS Advocates

MATH team:MATH team: Vince Crisostomo, Vince Crisostomo, Tri Do, Jordana De Leon, Royce Tri Do, Jordana De Leon, Royce Park, Mary Hoehn, Susan Park, Mary Hoehn, Susan Eisenberg, Frank Wong.Eisenberg, Frank Wong.

MATH Consortium Convener:MATH Consortium Convener: Asian and Pacific Islander Asian and Pacific Islander American Health ForumAmerican Health Forum– ManChui Leung, Christian ManChui Leung, Christian

AlvezAlvez

Scientific Partners:Scientific Partners: John Chin, John Chin, Willi McFarland, Kyung-Hee Choi, Willi McFarland, Kyung-Hee Choi, Teri LieglerTeri Liegler

Funder:Funder:– National Institutes of Health, National Institutes of Health,

NICHHDNICHHD

Our Community Partners:Our Community Partners:

AIDS Services in Asian Communities AIDS Services in Asian Communities (Philadelphia)(Philadelphia)

Asian Americans for Community Involvement Asian Americans for Community Involvement (Santa Clara)(Santa Clara)

Asian Health Services (Oakland)Asian Health Services (Oakland)

Asian Pacific AIDS Intervention Team (Los Asian Pacific AIDS Intervention Team (Los Angeles)Angeles)

Asian & Pacific Islander Coalition on HIV/AIDS Asian & Pacific Islander Coalition on HIV/AIDS (New York City)(New York City)

Asian & Pacific Islander Wellness Center (San Asian & Pacific Islander Wellness Center (San Francisco)Francisco)

Massachusetts Asians & Pacific Islanders for Massachusetts Asians & Pacific Islanders for Health (Boston)Health (Boston)

Guiding QuestionsGuiding Questions

Why study HIV among API MSM? What impact Why study HIV among API MSM? What impact on the epidemic can social epidemiological on the epidemic can social epidemiological research have?research have?

How does such research benefit the community? How does such research benefit the community? How does involvement of the community benefit How does involvement of the community benefit the research?the research?

What is needed to make the collaboration What is needed to make the collaboration successful and significant?successful and significant?

History: Queer API OrganizingHistory: Queer API Organizing

Homophobia, racism, anti-immigrant Homophobia, racism, anti-immigrant stigma in U.S. society, API society, and in stigma in U.S. society, API society, and in the LGBT communitythe LGBT communityTriple politics of invisibilityTriple politics of invisibility

Internalized messages about model Internalized messages about model minority statusminority statusLack of specific HIV prevention servicesLack of specific HIV prevention services

Trajectory of a community responseTrajectory of a community response

AIDS among APIs in the U.S.AIDS among APIs in the U.S.

Relatively smaller number of AIDS cases in the U.S.Relatively smaller number of AIDS cases in the U.S.– 6,864 cumulative AIDS cases through 20026,864 cumulative AIDS cases through 2002– About 50% are livingAbout 50% are living– 0.76% of all U.S. AIDS cases, vs 4.2% of U.S. pop0.76% of all U.S. AIDS cases, vs 4.2% of U.S. pop– 87% of all APIs with AIDS are male87% of all APIs with AIDS are male

High rates of rectal GC, syphilis, and risk High rates of rectal GC, syphilis, and risk behaviors (UAI with partners of unknown behaviors (UAI with partners of unknown status) (McFarland, et al 2004)status) (McFarland, et al 2004)

Source: CDC, HIV/AIDS Surveillance Supplemental Report, 2003

HIV/AIDS and API MSMHIV/AIDS and API MSM

HIV Prevalence: Low? High? Rising?HIV Prevalence: Low? High? Rising?

– 1.4% to 27.8% of API MSM in smaller studies using 1.4% to 27.8% of API MSM in smaller studies using convenience samplesconvenience samples

– 2.6% in TLS study of 18-29 y.o. API MSM in SF in 2.6% in TLS study of 18-29 y.o. API MSM in SF in 2001 (Choi 2004)2001 (Choi 2004)

– 6.1% by self-report in SF, 2005; 10% seroprevalence 6.1% by self-report in SF, 2005; 10% seroprevalence in a sub-sample (n=50) (SFDPH)in a sub-sample (n=50) (SFDPH)

Increased morbidity and hospitalizations due to Increased morbidity and hospitalizations due to lack of awareness of infection, lack of testing, low lack of awareness of infection, lack of testing, low risk perception (Eckholdt 1997, Nemoto 2003, Do risk perception (Eckholdt 1997, Nemoto 2003, Do 2005)2005)

History of the MATH StudyHistory of the MATH Study

• Much groundwork previously laid down by agencies, Much groundwork previously laid down by agencies, advocates, researchersadvocates, researchers

1996 API HIV Research Summit1996 API HIV Research Summit2000 API MSM survey collaboration to ensure data 2000 API MSM survey collaboration to ensure data

uniformity across agenciesuniformity across agencies2001 MATH study conceptualized2001 MATH study conceptualized2002 API SHARE Conference, meeting with agencies2002 API SHARE Conference, meeting with agencies2003 Proposal submitted to NICHD May – not funded2003 Proposal submitted to NICHD May – not funded

Met with agencies to discussMet with agencies to discuss2004 Revised, resubmitted Jan 2004. 2004 Revised, resubmitted Jan 2004.

Scored well, funded for October 2004Scored well, funded for October 2004

Benefits of a Community-Based Benefits of a Community-Based Scientific Research ApproachScientific Research Approach

Data, data, dataData, data, data– Influencing public health funding and policyInfluencing public health funding and policy

RelevanceRelevance– Development of novel, “real time” and highly relevant Development of novel, “real time” and highly relevant

prevention approachesprevention approaches– Highly appropriate and tailored services for API MSMHighly appropriate and tailored services for API MSM

Epidemic ImpactEpidemic Impact– Populations can be reached for prevention and testing Populations can be reached for prevention and testing

who might not otherwise access these serviceswho might not otherwise access these services

Scientific and Community Research Scientific and Community Research Priorities Priorities

Methodological RigorMethodological Rigor– Outreach, samplingOutreach, sampling– Biological outcomesBiological outcomes– Social and behavioral measuresSocial and behavioral measures– Assure quality of services, meet regulatory requirementsAssure quality of services, meet regulatory requirements– Maintain high scientific standardMaintain high scientific standard

Community ConcernsCommunity Concerns– Research must provide relevant and significant informationResearch must provide relevant and significant information– Impact on agencies’ capacity to provide servicesImpact on agencies’ capacity to provide services

It had to be successful and fundable!It had to be successful and fundable!

Specific Aims of MATHSpecific Aims of MATH

1.1. to estimate the prevalence and incidence of to estimate the prevalence and incidence of HIV infection among AAPI MSM;HIV infection among AAPI MSM;

2.2. to describe the socio-cultural and individual-to describe the socio-cultural and individual-level factors related to HIV testing and level factors related to HIV testing and knowledge of HIV infection status among AAPI knowledge of HIV infection status among AAPI MSM;MSM;

3.3. to examine the socio-cultural and individual-to examine the socio-cultural and individual-level correlates of HIV risk among AAPI MSM; level correlates of HIV risk among AAPI MSM; andand

4.4. to evaluate a consortium model framework for to evaluate a consortium model framework for conducting scientific, community-based HIV conducting scientific, community-based HIV research.research.

Current study designCurrent study design

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

Behavioral SurveyBehavioral Survey

Instrument Development, Translation, TestingInstrument Development, Translation, Testing

Scientific Areas of InterestScientific Areas of Interest– DemographicsDemographics– Cultural and Community MeasuresCultural and Community Measures

Acculturation and orthogonal phenomenaAcculturation and orthogonal phenomena– Social Networks Social Networks

egocentric and network mappingegocentric and network mapping– Behavioral Risk, Risk Reduction, and ResiliencyBehavioral Risk, Risk Reduction, and Resiliency– Psychological and Physical HealthPsychological and Physical Health

Questions posed by service providers, CAB Questions posed by service providers, CAB membersmembers

Biological Measures Biological Measures

Rapid HIV Test*Rapid HIV Test*

Confirmatory HIV Test (blood-based)*Confirmatory HIV Test (blood-based)*– CD4 Count (HIV stage)*CD4 Count (HIV stage)*– HIV Incidence (BED Assay)HIV Incidence (BED Assay)

HIV Viral LoadHIV Viral Load– HIV GenotypeHIV Genotype– HIV Clade (subtype)HIV Clade (subtype)

* To be disclosed to participant

Computerized Protocol ProceduresComputerized Protocol Procedures

Standard venue/online/media-based recruitment, and Standard venue/online/media-based recruitment, and reach difficult-to-reach persons through respondent-reach difficult-to-reach persons through respondent-driven sampling techniquedriven sampling technique– Following up on RDS proceduresFollowing up on RDS procedures

Eligibility screening, informed consentEligibility screening, informed consentHIV pretest counseling, HIV testingHIV pretest counseling, HIV testing– Follow-up with blood-based confirmatory testing, conducted by Follow-up with blood-based confirmatory testing, conducted by

partner laboratories nationwidepartner laboratories nationwide– Follow-up visits with preliminary positive / indeterminateFollow-up visits with preliminary positive / indeterminate

Administer a behavioral survey instrument focusing on Administer a behavioral survey instrument focusing on risk behaviors, API-specific cultural factors, resiliency, risk behaviors, API-specific cultural factors, resiliency, and emerging issues (e.g. travel)and emerging issues (e.g. travel)Study administration (financial, documentation, etc)Study administration (financial, documentation, etc)

Quality AssuranceQuality Assurance

Quality Assurance ActivitiesQuality Assurance Activities– Documentation of compliance with state regulationsDocumentation of compliance with state regulations– Environmental QA programEnvironmental QA program– Rapid HIV Testing QA programRapid HIV Testing QA program– Control Testing ScheduleControl Testing Schedule– Performance evaluation programsPerformance evaluation programs– Specimen collection and shipmentSpecimen collection and shipment

Project Activity Documentation, MonitoringProject Activity Documentation, Monitoring– Quarterly, Annual, and Adverse Event ReportsQuarterly, Annual, and Adverse Event Reports

Changes from Original ProtocolChanges from Original Protocol

Oversampled ethnic groups changed (from Oversampled ethnic groups changed (from Korean to South Asian)Korean to South Asian)

Languages changed (Japanese added)Languages changed (Japanese added)

Sample size decreasedSample size decreased

Number of community partners and Number of community partners and metropolitan areas changedmetropolitan areas changed

Fingerstick Fingerstick oral specimen collection oral specimen collection

Progress / Next StepsProgress / Next Steps

Complete pilot testing, start data collectionComplete pilot testing, start data collection– Ongoing capacity buildingOngoing capacity building– Assessment of the Consortium “effectiveness”Assessment of the Consortium “effectiveness”

Analysis, reporting & DisseminationAnalysis, reporting & Dissemination– Scientific manuscripts, community forumsScientific manuscripts, community forums– Scientific & service-oriented conferencesScientific & service-oriented conferences

In the future:In the future:– Hepatitis B testingHepatitis B testing– Intervention DevelopmentIntervention Development– Infinite possibilitiesInfinite possibilities

Capacity Building within Capacity Building within Community-Based Collaborative Community-Based Collaborative

ResearchResearch

What is Capacity Building?What is Capacity Building?

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

What is Capacity BuildingWhat is Capacity Building

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

What is Capacity BuildingWhat is Capacity Building

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

-Centers for Disease Control and -Centers for Disease Control and PreventionPrevention

Capacity Building ServicesCapacity Building Services

Managing the provision of Capacity Building Managing the provision of Capacity Building Assistance (CBA) services within researchAssistance (CBA) services within research– Budgeting, planningBudgeting, planning– Consortium convenerConsortium convener

Training & Technical AssistanceTraining & Technical Assistance– Group trainingsGroup trainings– One-on-one site visitsOne-on-one site visits

Technical ConsultationTechnical Consultation– Formal and ongoing needs assessmentsFormal and ongoing needs assessments

CoachingCoachingProviding ResourcesProviding Resources

Capacity Building ActivitiesCapacity Building Activities

HIV testing capacity assistanceHIV testing capacity assistance– Certification, trainingCertification, training– Technical assistanceTechnical assistance– Phlebotomy, linkage to laboratoriesPhlebotomy, linkage to laboratories– Quality assurance, regulatory complianceQuality assurance, regulatory compliance

Research capacityResearch capacity– IRB training, NIH requirementsIRB training, NIH requirements– Protocol implementationProtocol implementation

Capacity Building ActivitiesCapacity Building Activities

HIV Prevention Program CapacityHIV Prevention Program Capacity– Language capacityLanguage capacity– Funding, grantsFunding, grants– Referrals, linkagesReferrals, linkages

Overall outreach strategiesOverall outreach strategies– OnlineOnline– Venue-basedVenue-based– Respondent-drivenRespondent-driven– Ethnic group specificEthnic group specific

Community Advisory Board trainingCommunity Advisory Board training– How to read a research protocolHow to read a research protocol– Guidance on participating on a national CABGuidance on participating on a national CAB

SuccessesSuccesses

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

Challenges to DateChallenges to Date

State requirementsState requirements

Lab linkagesLab linkages

Changing hats: Direct service to researchChanging hats: Direct service to research

Translation/InterpretationTranslation/Interpretation

$$$$$$

Community ConcernsCommunity ConcernsDeliverablesDeliverables– Language and outreach capacities vary between Language and outreach capacities vary between

agenciesagencies– Flexibility around recruitment targets (e.g. by ethnicity)Flexibility around recruitment targets (e.g. by ethnicity)– Changing testing/research capacity with staffingChanging testing/research capacity with staffing– Reaching Ethnic compositionReaching Ethnic composition– Integration into existing HIV testing servicesIntegration into existing HIV testing services

Ethical concernsEthical concerns– Confidentiality in RDSConfidentiality in RDS– Literacy level, availability of audio surveyLiteracy level, availability of audio survey– Difficulty reaching population homophobia in API Difficulty reaching population homophobia in API

communities, racism in gay communitycommunities, racism in gay community

Scientific ConcernsScientific Concerns

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

MATH Study AcknowledgementsMATH Study AcknowledgementsAPI HIV/AIDS AdvocatesAPI HIV/AIDS Advocates

MATH team:MATH team: Vince Crisostomo, Vince Crisostomo, Tri Do, Jordana De Leon, Royce Tri Do, Jordana De Leon, Royce Park, Mary Hoehn, Susan Park, Mary Hoehn, Susan Eisenberg, Frank Wong.Eisenberg, Frank Wong.

MATH Consortium Convener:MATH Consortium Convener: Asian and Pacific Islander Asian and Pacific Islander American Health ForumAmerican Health Forum– ManChui Leung, Christian ManChui Leung, Christian

AlvezAlvez

Scientific Partners:Scientific Partners: John Chin, John Chin, Willi McFarland, Kyung-Hee Choi, Willi McFarland, Kyung-Hee Choi, Teri LieglerTeri Liegler

Funder:Funder:– National Institutes of Health, National Institutes of Health,

NICHHDNICHHD

Our Community Partners:Our Community Partners:

AIDS Services in Asian Communities AIDS Services in Asian Communities (Philadelphia)(Philadelphia)

Asian Americans for Community Involvement Asian Americans for Community Involvement (Santa Clara)(Santa Clara)

Asian Health Services (Oakland)Asian Health Services (Oakland)

Asian Pacific AIDS Intervention Team (Los Asian Pacific AIDS Intervention Team (Los Angeles)Angeles)

Asian & Pacific Islander Coalition on HIV/AIDS Asian & Pacific Islander Coalition on HIV/AIDS (New York City)(New York City)

Asian & Pacific Islander Wellness Center (San Asian & Pacific Islander Wellness Center (San Francisco)Francisco)

Massachusetts Asians & Pacific Islanders for Massachusetts Asians & Pacific Islanders for Health (Boston)Health (Boston)