Utafiti in Coastal Kenya

According to the KEMRI/Wellcome Trust Research Programme, going back as far as 1949, the Programme has explored health concerns fundamental to Kilifi District in Kenya. Each year, thousands of local people give their consent verbally or in writing to take part in the Programme's research. Given the widely acknowledged gap in understanding of research between scientists and the communities who often participate in research, researchers in Kilifi set out in 2001 to explore community perceptions of research.

The researchers began by seeking community views on engagement strategies. Following workshops involving community representatives, the District Health Management team, researchers from the programme, and an external group of ethicists, policy experts, and communication advisors, a communication strategy was drafted for the Programme which included community engagement.

In the district in which the programme works, one particular challenge was a need for greater community engagement in research, to create more awareness of research amongst local residents and other key health stakeholders, and to build community views into research planning and policy. Given the absence of existing channels to engage with community members, members of the programme's Community Liaison Group (CLG) have supported the development of a network of community members, currently comprising 220 people organized into groups representing specific geographic areas. Community representative groups meet on a regular basis with CLG staff for consultation on research related issues as well attending participatory workshops to build understanding of research, and remain members for 3 years. This turnover of community representatives aims to expand the number of people with experience of interacting with researchers through the network over time. Initially, community representatives were nominated by local community based organizations (CBOs), and endorsed at public meetings. CBOs were chosen because of their popularity and range; around 1 in 11 of the population are active CBO members and these groups cover a wide variety of constituencies. In the second round of elections, in response to community requests, nominations and elections were conducted directly with local residents at public meetings organized by local administrative leaders within groups of villages. The public meetings used for elections have also included outreach activities such as local drama, dance and song. Organisers say an estimated 6,000 local people have attended these meetings in election years.

The elected KCRs are not asked to formally feedback research information to the wider community given the difficulties in accurately representing a complex and ever-changing research environment, but are encouraged to communicate informally about the institution and the nature of research during their normal daily activities as household, community and CBO members. At the same time, the CLG communicate specific information about the research programme through a variety of outreach activities, supported by scientific staff. Through their consultation role, organisers say, KCRs provide an additional interface for information exchange and a platform for the development of greater mutual understanding between researchers and the community, as well as maintain the visibility and contribution of communities.

According to organisers, KCRs have also influenced institutional policy. Researchers are now asked to specify at the outset who their communities are and how they will engage with those communities at different stages of the research project. For unusual or very large studies, study-specific community engagement strategies are developed and supported through local review processes and a team of community facilitators working with KCRs and other representatives on the ground.

Training of all staff who interact directly with community members has begun to be coordinated across the Programme and strengthened by including teaching of research concepts, participants' rights, and communication. In addition, numerous community members have been invited to the research centre for open days, including tours and question-and-answer sessions, and organisers say that now even all non-scientific jobs at the Programme are widely advertised at the local level.

Health

According to the Programme, what started as a small-scale communication process has evolved into a programme of partnership and consultation between researchers and communities in the district. The hope is that meaningful community engagement is strengthening the protection, respect, and empowerment of the communities to whom the KEMRI/Wellcome Programme owes so much.

The impetus for the new strategy came from research conducted by KEMRI that found that most people were joining studies for the immediate individual benefits and lacked a good understanding of the research elements of the activities. Interrelated reasons included a therapeutic misconception of research, the difficulty even research staff had in distinguishing between research and treatment for some types of studies, and the resource constraints faced by households and the public health system.

For more information, contact:
Sassy Molyneux
KEMRI/Wellcome Trust
smolyneux@kilifi.kemri-wellcome.org

Vicki Marsh
KEMRI/Wellcome Trust
vmarsh@kilifi.kemri-wellcome.org

Dorcas Kamuya
KEMRI/Wellcome Trust
dkamuya@kilifi.kemri-wellcome.org

Salim Mwalukore
KEMRI/Wellcome Trust
smwalukore@kilifi.kemri-wellcome.org