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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

KEMRI Centre for Geographic Medicine Research Coast (since 1989)

.


• Multidisciplinary research center

• Over 500 staff

• Majority of research participants live in 15 locations within DSS (240 000 people)

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


Broadest definition: a form of interactivity between researchers and communities concerned with research

Community-Unit Interaction study (2001)

• Generally strongly positive descriptions of KEMRI.

• Relatively little understanding of our research

• Range of rumours and concerns


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


*External Advisory Committee


Working with Health stakeholders(e.g. Ministry of Health)

Training of centre staff


A range of community activities and channels


community engagement in Kilifi


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

KEMRI- Community Representatives (KCRs)

One of the community engagement channels


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


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


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.


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


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


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

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
