collaborative community partnerships: experiences of setting up a communityengagement process
TRANSCRIPT
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Collaborative community partnerships: experiences of setting up a community
engagement process
Dorcas Kamuya, Vicki Marsh, Sassy MolyneuxSocial and Behavioral Research Group,
KEMRI- Kilifi, Kenya
South Africa December 2008
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KEMRI Centre for Geographic Medicine Research Coast (since 1989)
.
South Africa December 2008
• Multidisciplinary research center
• Over 500 staff
• Majority of research participants live in 15 locations within DSS (240 000 people)
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Community engagement (Weijer et al: Nature genetics 1999, Science 2000, Pharmacogenomics Journal 2004, CIOMs 2002, )
• Greater voice of communities through consultation or decision-making – protocol development– information giving process, – (Future) access to data and
samples
• Potential to protect, respect, empower and build partnerships with communities
• In international collaborative research –differences in norms, culture, knowledge, resources
South Africa December 2008
Broadest definition: a form of interactivity between researchers and communities concerned with research
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Community-Unit Interaction study (2001)
• Generally strongly positive descriptions of KEMRI.
• Relatively little understanding of our research
• Range of rumours and concerns
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Communication strategy… a set of messages, activities, channels, and materials
aimed at improving communication and institutional policies in order to...
• Build partnership and trust in the institution • Meet ethical and good practice guidelines• Ensure programme sustainability
And three levels of interactivity:1. Within KEMRI2. KEMRI-Stakeholders3. KEMRI-Community
South Africa December 2008
*External Advisory Committee
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Working with Health stakeholders(e.g. Ministry of Health)
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Training of centre staff
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A range of community activities and channels
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community engagement in Kilifi
South Africa December 2008
KCRsTraining &
consultationKey SH groupsCivil service; MOH; otherConsultation/ sensitization
CAB for consultation on
HIV research
Interface staff training;
Supportive policy environment
Community Outreach:Public meetingsSmall groups
Community Opinion leaders:
consultation
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KEMRI- Community Representatives (KCRs)
One of the community engagement channels
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KEMRI-Community Representatives (KCR)
• Going to community level and asking for nominations and election at large-scale community meetings (220 people in 15 locational groups).
• Chiefs and assistant chiefs co-opted members
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KCR Roles and Functioning
Functioning• Terms of reference discussed and agreed on.• Two years term as KCR members, after which others are elected• Support provided includes fare refund and stationery
Roles• Consultation on planned and on-going research
at regular and ad hoc meetings (x3-4 pa)• In their daily lives, responding to community
questions and feedback issues.Not…• Pro-actively engage in discussion around
KEMRI, research or project specific activities• Community mobilizers
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Generally, the KCR members...
• Representation: provide gender representation, are slightly older and better educated, with fewer following traditional beliefs.
• Sustainability: well sustained with high meeting attendance and low turnover rates.
• Understanding of roles: reported good understanding of their roles, but face practical challenges of unmet health needs and balancing autonomy and independence in negotiating for resources.
South Africa December 2008
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A range of Issues raised in KCR meetings • Clinical and research procedures • Recruitment in to studies• Study benefits and risks • Employment in KEMRI• Quality of care • Other issues were about bed nets, Ministry of Health
vaccination programmes. • Other issues unrelated to research or health (e.g. IGA)
Generally a large number of issues raised were about treatment
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Responding to issues raised
• 10 staff (Community Liaison Group) with facilitation skills and an open door policy e.g. – telephone helpline,.– proactive follow-up, discussion and resolution around key
issues raised• Issues raised influence working of Communication
and Consent Committee (subgroup of IRB) • Community engagement plans explicit in all new
protocols.• Increased transparency and accountability in centre’s
employment procedures
South Africa December 2008
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Some lessons learnt…(KCRs)• Shifting goalposts – in negotiations, support• Understanding of voluntariness and balance of
roles and requests for additional resources• Challenge in balancing community needs and
individual KCR needs (which are sometimes turned into community needs)
• Longer involvement ultimately make the KCRs not quite typical of community members
….difficult to move to shared power…..South Africa December 2008
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Acknowledgements
• Profs. Doug Wassenaar and Nhlanhla Mkhize (SARETI, Uni KZN/Pretoria SA)• Prof. Lucy Gilson (UCT, SA)• Mr. John Muturi (MERLIN Kenya)• Mr. Oby Obyerodhiambo (FHI, Kenya).
• CLG, KEMRI Kilifi• Community members and opinion leaders of Kilifi• KCR members• KEMRI and MoH staff
External Advisory Board
South Africa December 2008