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

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)

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 South Africa December 2008 Broadest definition: a form of interactivity between researchers and communities concerned with research

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

Community-Unit Interaction study (2001) Generally strongly positive descriptions of KEMRI. Relatively little understanding of our research Range of rumours and concerns South Africa December 2008

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: Within KEMRI KEMRI-Stakeholders KEMRI-Community South Africa December 2008 *External Advisory Committee

… 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:

Within KEMRI

KEMRI-Stakeholders

KEMRI-Community

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

Training of centre staff South Africa December 2008

A range of community activities and channels South Africa December 2008

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

KEMRI- Community Representatives (KCRs) One of the community engagement channels South Africa December 2008

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 South Africa December 2008

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 South Africa December 2008

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. South Africa December 2008

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 South Africa December 2008

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 South Africa December 2008

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

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…..

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

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