Bella Starling, Dorcas Kamuya, Caroline Gikonyo, Sassy Molyneux and Vicki Marsh reveal challenges of communicating research in Coastal Kenya

Meaningful community participation has been advocated for many types of health research for some time. Forms and mechanisms are debated, but there is broad agreement on the potential for increased participation to afford greater protection, respect and empowerment to communities while facilitating research.

Nowhere is this notion more relevant than where research is needed the most – in developing countries. They bear the highest burden of disease. It is also in developing countries that the contrasts in cultural and social norms and technological know-how between researchers and research participants are often the greatest.

But are citizen voices present or heard when developing and carrying out research in such settings?

Wellcome Trust research in Kenya

The KEMRI (Kenya Medical Research Institute)/Wellcome Trust Research Programme is based just north of Mombasa, in Kilifi District.(1) With a popular tourist coastline set on the Indian Ocean, the district contains the poorest constituency in Kenya. It has a high malaria burden, particularly in children: 35 per cent of admissions to Kilifi District Hospital’s paediatric ward are due to malaria, and resistance to malaria drugs is a real problem. Bacterial and viral infections are also devastating.

Going back as far as 1949, the Programme has explored health concerns fundamental to the District. The centre has now developed a strong international reputation for its wide-ranging interdisciplinary research covering clinical, basic science, epidemiological and public heath aspects of major childhood and adult disease. Each year, thousands of local people give their consent verbally or in writing to take part in the Programme’s research. Over 4,000 parents consent for their children to be involved in clinical studies – both observational and interventional – every year.

Throughout, research has always been conducted to the highest international ethical standards. All research, including informed consent processes, is reviewed and approved in advance by local, national and often international scientific and ethical review boards. Community engagement has been paramount: research teams have routinely consulted local administrative leaders in advance of all community-based research; and information is disseminated through these leaders, ‘barazas’ (public meetings) and print materials.

Community perceptions

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.

They found that most people were joining studies for their immediate individual benefits, and without a good understanding of the research elements of activities. Inter-related 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.

An underlying challenge is that in Kigiriama and Kiswahili – the local languages – there are no equivalent, widely understood, terms for Western concepts of ‘research’. Terms such as ‘utafiti’ and ‘uchunguzi’ were, rather, synonymous with ‘investigation’ or ‘test’ for clinical treatment.

Local concerns

Low understanding of research is common all over the world, indicating the challenges of achieving ethical ideals in any setting. In Kilifi this low understanding – and the resource differences between the research centre and general community – led some community members to request a level of health service provision well beyond the standard remit of research teams, and others  to fill the gaps in information and understanding with their own explanations for routine activities. 

In filling the gaps, community members drew on fragments of folk lore, religion and traditional beliefs. Rumours became common currency, often exchanged with humour as well as concern: Why do the doctors need to take so much blood? What are they doing with it? Are they mixing it and selling it? Or giving it to evil people or spirits? Interestingly, very similar rumours and concerns have been reported around medical research activities from different settings in Africa, including some thousands of miles away.

The Wellcome Trust logo, shown on the Programme’s vehicles, depicted two intertwined snakes. Snakes are a well¬recognised symbol for devil worshipping in Kenya, and this logo was of particular concern in an area in which two intertwined snakes were reported to foretell a death in the family. People also questioned the Programme’s institutional policies, asking, ‘Why can’t more of us be employed there?’ and challenged the composition of previously established community advisory boards, set up through community leaders.

It seemed that, despite the team’s best efforts and a generally positive view of the Programme, misunderstandings and concerns about its work persisted.

Community representation

In response, the Programme has begun to develop and implement a new approach to community engagement, based on action research and participatory processes.(2)

Researchers began by seeking community views on engagement strategies. Workshops involving community representatives, the District Health Management team, researchers from the Programme and an external group of ethicists, policy experts and communication advisors, drafted a communication strategy for the Programme, including community engagement. The priority area for increased communication in Kilifi was the population living around the District General Hospital, around 240,000 in number, who account for most of the hospital admissions, as well as research participants.

The thorny issues of defining the ‘community’, ensuring fair, balanced and accurate representation, and avoiding over¬politicisation and tokenism are well described in the literature on community engagement in medical research, drawing particularly on experience from HIV/AIDS research. In Kilifi a particular dual challenge was a clear need for greater community participation in research, and no obvious existing channels to achieve this. In response, research staff are developing a novel strategy for community representation through the widespread community-based organisations (CBO) in the district.

CBOs cover a wide variety of constituencies within the community, ranging in size from small to large, and representing women, men and young people through activities such as income generation, sport, drama, music, health and farming.

Through surveying registered and unregistered CBOs in a pilot area (population around 98,000), membership in CBOs was confirmed to be high: one active CBO member to every 11 people in the population. CBOs were asked to nominate their own representatives for a new network of 140 KEMRI community representatives (KCRs) across all the areas involved in research. Nominees were endorsed as representatives at public meetings that included outreach activities such as local drama and song. An estimated 6,000 local people attended these meetings.

Representatives’ role

The elected KCRs undertake to strengthen communication between KEMRI and the community through regular and ad hoc feedback meetings with KEMRI community liaison staff, and through informally passing on information about KEMRI’s activities during their normal daily activities as household, community and CBO members. In this way, they provide an additional interface for information exchange, a platform for the development of greater mutual understanding between researchers and the community, and maintain the visibility and contribution of modest communities.

Apart from communication roles, 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 particularly 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 community representatives on the ground. 

The training of all staff who interact directly with community members has begun to be coordinated across the programme and strengthened by the inclusion of teaching on research concepts, participants’ rights and communication.

Numerous community members have been invited into the research centre for open days, including tours and question-and-answer sessions, and now even all non-scientific jobs at the Programme are widely advertised at the local level.

Programme vehicles carry only the name, and not the logo, of the Wellcome Trust. Most importantly, the way in which the Ministry of Health and KEMRI interact locally is being re-considered, and there are far more forums for open dialogue between research staff and community members at all levels.

Partnership

What started as a small-scale communication process has evolved into a programme of partnership and consultation between researchers and Kilifi communities.

The journey has just begun, and evaluation of the community engagement strategy continues.  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 two-way dialogue that has grown benefits not only Kilifi people but also the science being carried out amongst them.  

Evaluations over time aim to assess the effectiveness and sustainability of these strategies, provide information that can be generalised to similar research settings, and contribute to debates on the universality of ethical principles for research.

References

1. KEMRI (Kenya Medical Research Institute)/Wellcome Trust Research Programme document (PDF)
2. V Marsh, D Kamuya, C Gikonyo, Y Rowa, S Molyneux, (2007). Beginning community engagement at a busy biomedical research programme:  experiences from KEMRI CGMRC-Wellcome Trust Research Programme, Kilifi. Submitted for a forthcoming Social Science & Medicine Special Issue.

Dr Bella Starling is International Activities Manager, Medicine Society and History, at the Wellcome Trust

Dorcas Kamuya, Caroline Gikonyo, Sassy Molyneux and Vicki Marsh are research staff responsible for the design and implementation of community engagement work for KEMRI/Wellcome Trust in Kilifi