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
Overview • WELCOME & INTRODUCTION • Lead-in questions • What is the MATH study? • REFLECTION / DISCUSSION • MATH CONSORTIUM AND CAPACITY BUILDING • COMMUNITY BUILDING THROUGH RESEARCH • CLOSING & EVALUATION
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.
Men of Asia & the PacificTesting for HIV The History, Anatomy, and Physiology of MATH
Acknowledgements Our Community Partners: AIDS Services in Asian Communities (Philadelphia) Asian Americans for Community Involvement (Santa Clara) Asian Health Services (Oakland) Asian Pacific AIDS Intervention Team (Los Angeles) Asian & Pacific Islander Coalition on HIV/AIDS (New York City) Asian & Pacific Islander Wellness 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
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?
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
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
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 (n=50) (SFDPH) • Increased morbidity and hospitalizations due to lack of awareness of infection, lack of testing, low risk perception (Eckholdt 1997, Nemoto 2003, Do 2005)
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
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
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!
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.
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
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
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
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)
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
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
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
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…
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…
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
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
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
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
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 CBO’s existing programs. • Changing agencies’ views of research and evaluation methodologies.
Challenges to Date • State requirements • Lab linkages • Changing hats: Direct service to research • Translation/Interpretation • $$$
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
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?
MATH Study Acknowledgements Our Community Partners: AIDS Services in Asian Communities (Philadelphia) Asian Americans for Community Involvement (Santa Clara) Asian Health Services (Oakland) Asian Pacific AIDS Intervention Team (Los Angeles) Asian & Pacific Islander Coalition on HIV/AIDS (New York City) Asian & Pacific Islander Wellness 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