1. Community Engagement….
Getting it Right!
In HIV Prevention Research, Policy & Practice
Women’s HIV Prevention Summit
30- 31 August 2011, Emperors Palace Johannesburg South Africa
Rouzeh Eghtessadi (MPH)
SAfAIDS Regional Office
Pretoria, South Africa
Email: rouzeh@gmail.com
2. 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 review
and establishment and translation into practice
Facilitate informed-voluntary & ethical recruitment into trials
Prepare communities for uptake and demand for access,
availability and affordability of new technologies once hit market
3. Defining ‘community’
Good Participatory Practice (GPP) defines community
as “separate and overlapping groups of people who are
infected and affected by HIV in various ways suggesting
a shared identity for members of the same community”
What is your definition?
4. 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
5. Evolution of Community Engagement
1970s – 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 strategies
2000s
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
6. 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 )
7. Tools for Community Engagement (1)
Spheres of Community & Stakeholders Engagement [Global
Campaign on Microbicides (GCM)] – defining/mapping
International civil society
Trial
participants
Host National
and study
Community Stakeholders
staff
8. Tools for Community Engagement (2)
Community Advisory Boards (CABs)/Committees (CACs) (e.g
MDP=Microbicide Development Programme, Tanzania) – structural bodies
Community Information Seminars (CISs) – dialogue for sharing/consensus
Community Based Participatory Research (CBPR) – research addressed
Community Involvement Community of Practice (CoP) launched 2008
by GCM - advocacy facilitation
9. Tools for Community Engagement (3)
Partnerships for Youth Prevention ( eg C2P= Connect to
Protect) – special groups eg adolescents
New Prevention Technology Societies (eg NHVMS=New HIV
Vaccine & Microbicide Society in Nigeria) – civil society
inclusion
Community Research Ethics Review (eg REBs= research ethics
boards) - communities are implementing research ethics review
processes to determine whether /how research is conducted in
their communities
11. Exploring Approaches : Enabling Sustained
Effective Community Engagement
Lets 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
12. 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?
13. 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?
14. Learn more….
“Community engagement in HIV prevention trials: Evolution of the field and
opportunities for growth” aids2031 background doc (GCM, Path – 2009)
“Defining best practices for community representative involvement in HIV
clinical research networks” (NIAID- USG, 2005)
“Community Engagement and Investment in Biomedical HIV Prevention
Research for Youth: Rationale, Challenges, and Approaches” (University of
Cape Town, John Hopkins School of Medicine, AVAC, Kenya MRI, Desmond
Tutu HIV Centre, Journal of AIDS-2010)
“Using Community-Based Participatory Approaches to Mobilize Communities
for 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
15. Thank you……
“Never regard study as a
duty, but as the enviable opportunity to learn to
know the liberating influence of beauty in the
realm of the spirit of your own personal joy and
to the profit of the community to which your
later work belongs”
- Albert Einstein
