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

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Presented by Dorcas Kamuya, Vicki Marsh, Sassy Molyneux (Social and Behavioral Research Group, KEMRI- Kilifi, Kenya) at the Public Engagement Workshop, 2-5 Dec. 2008, KwaZulu-Natal South Africa, http://scienceincommunity.wordpress.com/

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

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

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