Community Engagement towards HIV Prevention for Women
Community Engagement…. Getting it Right!In HIV Prevention Research, Policy & Practice Women’s HIV Prevention Summit30- 31 August 2011, Emperors Palace Johannesburg South Africa Rouzeh Eghtessadi (MPH) SAfAIDS Regional Office Pretoria, South Africa Email: firstname.lastname@example.org
Rapid recap of Experiences…Sustainable community engagement in HIV prevention research, policy and practice cannot be understated ! WHY?Enhance understanding and support for research, policy reviewand establishment and translation into practiceFacilitate informed-voluntary & ethical recruitment into trialsPrepare communities for uptake and demand for access,availability and affordability of new technologies once hit market
Defining ‘community’Good Participatory Practice (GPP) defines communityas “separate and overlapping groups of people who areinfected and affected by HIV in various ways suggestinga shared identity for members of the same community”What is your definition?
What does Community Engagement Comprise ?Some Principles MAPPING: Determine (defining) who makes up the community, who are key groups/influencers? Participatory baseline dialogue- what are needs? and analysis? Identify community resources and two-way effective communication modes PARTICIPATORY DIALOGUE: intervention-design & execution dialogue; monitoring &evaluation dialogue and documentation dialogue BUILDING BLOCKS: building relationships & trust - OWNERSHIP, building capacity to identify and address own socio- developmental needs, building ethical parameters at all stages of intervention SCALE-UP: Participatory documentation of learning and good practice Participatory dissemination strategy for cross-learning and uptake of good practice
Evolution of Community Engagement1970s – 1990s Women’s protests: demand for inclusion in decision-making role for biomedical research Activists were well-versed in research to back demands Community Advisory Boards (CABs) increased – became more refined eg inform community, increase & maintain enrolment, solve problems, develop referral and support strategies2000s Push ( inclusion) & pull (untrained, overburdened, marginalised individuals engaging with Western educated researchers) began Expectations versus Realities/Challenges of CABS became more clear Increased demand for transparency of research with communities
We have learnt norms- now we are at Partnership Building & Mobilisation Historical (no involvement of community) Advisory (community input offers specifically when requested by researchers) Collaborative (community cooperate in developing and implementing research) Partnership and Mobilisation (in addition strengthen role and capacity to identify needs, and additional services provided to the community eg pap smears, access to contraception etc )
Tools for Community Engagement (1)Spheres of Community & Stakeholders Engagement [GlobalCampaign on Microbicides (GCM)] – defining/mapping International civil society Trial participants Host National and study Community Stakeholders staff
Tools for Community Engagement (2)Community Advisory Boards (CABs)/Committees (CACs) (e.gMDP=Microbicide Development Programme, Tanzania) – structural bodiesCommunity Information Seminars (CISs) – dialogue for sharing/consensusCommunity Based Participatory Research (CBPR) – research addressedCommunity Involvement Community of Practice (CoP) launched 2008by GCM - advocacy facilitation
Tools for Community Engagement (3)Partnerships for Youth Prevention ( eg C2P= Connect toProtect) – special groups eg adolescentsNew Prevention Technology Societies (eg NHVMS=New HIVVaccine & Microbicide Society in Nigeria) – civil societyinclusionCommunity Research Ethics Review (eg REBs= research ethicsboards) - communities are implementing research ethics reviewprocesses to determine whether /how research is conducted intheir communities
Focusing on the Core Areas…. Policy Practice Research
Exploring Approaches : Enabling Sustained Effective Community EngagementLets Reflect on the Current Status: What current community engagement activities are being implemented ? How are they linking research, policy and practice?Lets Identify What is Working: What role can the community play in informing new HIV prevention research, policy and improving current practice? What specific activities/actions are needed to ensure that community stakeholders are not sidelined when it comes to policy making, conducing research, dissemination of research results and implementation of new technologies
What is the Future of Community Engagement Approaches? “Releasing New Innovation! ”a) Which current approaches are working (what are good/best practices, name/describe them)? Why are they working?b) Which approaches are not working? What are the gaps?c) How do we know the above – documentation, tracking - M&E, operational research or anecdotal?d) What new innovation and approach should be scaled-up? Why? What is needed for adoption, replication and scale-up (eg resources, training?) of what works/good practices?
What is the Future of Community Engagement Approaches? “Releasing New Innovation! ”e) What practical role can communities play in • Informing research? • Rolling out new prevention technologies (eg uptake etc )? • Sharing good practice (eg linking research with social behaviour change mobilisation advocacy and community preparedness eg work with TLs SAfAIDS Rock HIV Prevention and Changing the River’s Flow programmes)?f) What is needed to catalyse the above roles (eg literacy & preparedness)?g) In view of communication approaches • Where are the gaps in two-way communication (community & researchers/policy makers) and how can they be addressed? • What forms of communication platforms are appropriate and effective?
Learn more….“Community engagement in HIV prevention trials: Evolution of the field andopportunities for growth” aids2031 background doc (GCM, Path – 2009)“Defining best practices for community representative involvement in HIVclinical research networks” (NIAID- USG, 2005)“Community Engagement and Investment in Biomedical HIV PreventionResearch for Youth: Rationale, Challenges, and Approaches” (University ofCape Town, John Hopkins School of Medicine, AVAC, Kenya MRI, DesmondTutu HIV Centre, Journal of AIDS-2010)“Using Community-Based Participatory Approaches to Mobilize Communitiesfor Policy Change” (Theresa Wynn et al, Journal of Health Promotion –Family and Community Health – 2011)http://www.avac.org/ht/d/sp/i/304/pid/304 (Good Participatory Practice-AVAC)http://connect2protect.org/http://www.jstor.org/pss/10.1525/jer.2011.6.2.13
Thank you…… “Never regard study as aduty, but as the enviable opportunity to learn toknow the liberating influence of beauty in therealm of the spirit of your own personal joy andto the profit of the community to which yourlater work belongs” - Albert Einstein