Click to edit Master title style Advancing the health and well-being of people most affected by AIDSCommunity-Driven Responses toHIV Infection in OaklandCDC HIV Prevention Conference, Atlanta, GAstyles Click to edit Master textAugust, 15, 2011 Second level Third level Partner Organizations: Fourth level •Pangaea Global AIDS Foundation •CAL-PEP Fifth level •La Clinica de la Raza •University of California, Berkeley – School of Public Health •Alameda County Office of AIDS Administration This project is supported by the Office of AIDS Research (OAR), National Institutes of Health
Context to edit Master ClickThe History title style Advancing the health and well-being In 1998 Alameda County was the firstof peoplehealth jurisdiction to local most affected by AIDS declare a HIV/AIDS State of Emergency for African Americans.The Issue Late diagnosis of HIV – an AIDS diagnosis within one year of an HIV positive result – mean missed opportunities for treatment AND prevention. Click to edit Master text stylesThe Crisis In California, 61% of HIV positive level Second individuals were diagnosed late Third level compared to 75% in Alameda County Fourth levelThe Trend Fifth level County are most likely to be Late diagnosed individuals in Alameda African American or Latino/a.
Click to edit MasterContext (cont.) title styleThe Programs Advancing the health and well-being of people most affected by AIDS In 2009, statewide cuts to HIV testing programming decreased available testing (from 11 publically funded sites to 8).The “Shadow City” Effect Oakland is the most diverse city in Alameda County, and one of the most diverse in the state, with over 170 languages spoken. Therefore, the nature and face of the text styles Click to edit Master epidemic is VERY different Second level than our Sister City across the Bay (San Francisco), requiring different responses. Third level Fourth level Fifth level
Click to edit MasterLate Testers in Alameda County1990 – 2010 title style Advancing the health and well-beingDefinition: A individual who receives an initial concurrent HIV+ test result and AIDSby AIDS of people most affected diagnosisor who progresses to an AIDS diagnosis within one year of an initial HIV+ diagnosis. Late Testers AIDS Dx at 1st HIV Test 80.0 70.0 60.0 50.0 Click to edit Master text styles Percent 40.0 Second level 30.0 20.0 Third level 10.0 Fourth level 0.0 Fifth level 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010Data Source: CAPE Unit, AlamedaCounty Public Health Department, April2011
Click to edit MasterAlameda County Late Testersby Race/Ethnicity title style Advancing the health and well-being of people most affected by AIDS % Late Testers All other Cases AIDS Dx at 1st HIV test All Other AIDS Cases 100 100 80 80Percent Percent 60 60 40 Click to edit Master text styles 40 20 Second level 20 0 Third level 0 White African Am Latino Asian/Pacific Amer Ind/AK Multi-race White African Am Latino Asian/Pacific Amer Ind/AK Multi-race Fourth level Isl Native Isl Native Late Testers Fifth levelAIDS Dx at 1st HIV Test Data Source: CAPE Unit, Alameda County Public Health Department, April 2011
Click to edit MasterSo, we had an idea….Why CBPR to Understand Late Diagnosis? title style Advancing the health and well-being of people most affected by AIDS• Community-Based Participatory Research allows for in-depth actionable exploration of a specific issue. • Late diagnosis as a social justice issue – this should not be happening.• Collaborative approaches among two Oakland communities traditionally “at odds” and most affected – African American and Latinos – likely to have greater impact. Click to edit Master text styles• Second level Sharing power of decision-making between researchers and communities – gets at the heart of level Third the matter and ensures data are used for improving programs/developing interventions Fourth level• Opportunity for bi-directionalFifth level learning – across culture, across agencies -- enhancing our strengthens, supporting our capacity needs.
ClickObjectives MasterResearch to edit title style• To understand individual and structural Advancing the health and well-being barriers most affected by AIDS of people to earlier detection HIV and assess “missed opportunities” for testing/entry into care of through: 1. In-depth interviews among patients diagnosed late 2. key informant interviews with popular opinion leaders• To make existing (but un-accessible) county and state HIV testing and AIDS case data available to communities for improved programming. Click to edit Master text styles• Second level To engage community and stakeholders in reviewing findings from Third level Aims 1 & 2, and identify and/or develop community-driven responses to increase early HIV detection and diagnosis. Fourth level• Fifth level leading to recommended To pilot test the most promising responses, models of implementation in Oakland.
Click to edit MasterConceptual Framework title style Advancing the health and well-being of people most affected by AIDS Click to edit Master text styles Second level Third level Fourth level Fifth level Re-defining “Broad” community engagement: using existing support groups, existing advocacy groups, providers and “Popular Opinion Leaders.”
OurClick to edit First Steps Master title style• Developing Guiding Principles – CBPR Covenant and well-being Advancing the health of people most affected by AIDS• Meaningful engagement of community: Use what’s pre-existing! • Joint community forums to introduce the concept of “Late Diagnosis” • Using existing “Community Advisory Boards” • Align ourClick to activities with ongoing community events. research edit Master text styles Second level • Leveraging client groups at partner agencies as advisors. Third level • Engaging the public Fourth level health department Fifth level • Understanding how to request data from our State Office of AIDS and local health department
Click to edit MasterCommunity Forums title style Advancing the health and well-being• CBO partners planned two joint forums to coincide with National of people most affected by AIDS HIV Testing Day –African American and Latino groups.• All partners present and supportive of each other’s events.• Goal: To understand why late diagnosis is happening here, in your neighborhood, with your “folks”? Click to edit Master text styles• INTERACTIVE format: small grouplevel Q&A., etc. Second work, Third level• Services attached to the forums: mobile rapid HIV testing was Fourth level available via CAL-PEP; La Fifth level Clinica presenters were clinical providers
Click to edit MasterCommunity Forums title styleLessons Learned Advancing the health and well-being of people most affected by AIDS• Little understanding of the concept of “Late Diagnosis” and late testing• Lack of knowledge that is occurring in their community.• From African Americans: Stigma, anger, guilt, shame and betrayal within the community (young women’s story). Click to edit Master text styles Second level• From Latinos/as: Taboo subjects- sexuality and patriarchal Third level women; need to change relations of power between men and Fourth level perception of availability and access to services Fifth level• Overarching Issues: Internal and external neighborhood and economic dynamics (Fruitvale and West Oakland)
Click to edit MasterUsing what we learned title the State of Emergency to• Advocacy: Amending style Advancing the health and well-being of people most affected by AIDS Include late testing• Research planning: • More use of group discussions, reduced and focused in-depth interviews (IDIs) • Capitalize on edit Master text styles Click to existing community structures • Exploration of Second level dynamics and stigma, gender Third level structural racism as key drivers of late diagnosis Fourth level Fifth level • Implement 1-3 CBPR pilot projects: Encourage community to conduct research!
Click to edit MasterCBPR Recommendations title style Advancing the health and well-being of people most affected by AIDS• Jointly develop research ideas: communities and researchers together• Sustainability of community based org. for evidence-based interventions and funding• Develop guidelines – a covenant to hold each partner accountable Master text styles Click to edit• Second level Be flexible: research strategies/approaches ever evolving to reflectThird information new level• Fourth level Work hard to respect and trust each other Fifth level
ClickPartners to edit Master• La Clinica de la Raza title style • Christina Grijalva, Alfredo Lopez, Berta Hernandez well-being Advancing the health and of people most affected by AIDS• California Prevention and Education Project (CAL-PEP) • Gloria Lockett, Carla Dillard Smith, Aminatu Yusuf• University of California, Berkeley • Meredith Minkler, Sandi McCoy Click to edit Master text styles• Office of AIDS Administration, Alameda County Second level • Kabir Hypolite Third level Fourth level• Pangaea Global AIDS Foundation • Ifeoma Udoh, Megan Dunbar,levelPlumley, Sheryl Walton Fifth Ben This project is supported by the Office of AIDS Research (OAR) National Institutes of Health