Collaborative community partnerships: experiences of setting up a community engagement process

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  • Collaborative community partnerships: experiences of setting up a communityengagement processDorcas Kamuya, Vicki Marsh, Sassy MolyneuxSocial and Behavioral Research Group, KEMRI- Kilifi, KenyaSouth Africa December 2008

    South Africa December 2008

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  • KEMRI Centre for Geographic Medicine Research Coast (since 1989)

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    South Africa December 2008 Multidisciplinary research centerOver 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 developmentinformation giving process, (Future) access to data and samples

    Potential to protect, respect, empower and build partnerships with communitiesIn international collaborative research differences in norms, culture, knowledge, resources

    South Africa December 2008Broadest 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 researchRange 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 guidelinesEnsure programme sustainability

    And three levels of interactivity:Within KEMRIKEMRI-StakeholdersKEMRI-CommunitySouth Africa December 2008*External Advisory Committee

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  • South Africa December 2008Working with Health stakeholders(e.g. Ministry of Health)

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  • Training of centre staffSouth Africa December 2008

    South Africa December 2008A range of activities within the centre, including trainings using particiaptort messages*

  • A range of community activities and channelsSouth Africa December 2008

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  • community engagement in KilifiSouth Africa December 2008KCRsTraining &consultation

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  • KEMRI- Community Representatives (KCRs)

    One of the community engagement channelsSouth Africa December 2008

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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 FunctioningFunctioningTerms of reference discussed and agreed on.Two years term as KCR members, after which others are electedSupport provided includes fare refund and stationery

    RolesConsultation 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.

    NotPro-actively engage in discussion around KEMRI, research or project specific activitiesCommunity 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

    South Africa December 2008In a preliminary evaluation of the last group of KCRs, we found that *

  • A range of Issues raised in KCR meetings Clinical and research procedures Recruitment in to studiesStudy benefits and risks Employment in KEMRIQuality 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 treatmentSouth Africa December 2008

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  • Responding to issues raised10 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 raisedIssues raised influence working of Communication and Consent Committee (subgroup of IRB) Community engagement plans explicit in all new protocols.Increased transparency and accountability in centres employment procedures

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  • Some lessons learnt(KCRs)Shifting goalposts in negotiations, supportUnderstanding of voluntariness and balance of roles and requests for additional resourcesChallenge 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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  • AcknowledgementsProfs. 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 KilifiCommunity members and opinion leaders of KilifiKCR membersKEMRI and MoH staff

    External Advisory BoardSouth Africa December 2008

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    *A range of activities within the centre, including trainings using particiaptort messages*

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    *In a preliminary evaluation of the last group of KCRs, we found that *

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