A two-way street: engaging communities with research

In 2007 Professor Tom Williams at the KEMRI-Wellcome Trust Research Programme in Kilifi, Kenya, began to study genetic variation in young children's susceptibility to infectious disease. He planned to collect blood samples from 15,000 healthy children under one year of age, and compare those from children who were later admitted to hospital with infectious diseases with those from children who stayed healthy. But how to explain to the parents why he needed blood samples from perfectly healthy babies?

'Taking blood is a sensitive issue', says Dr Vicki Marsh of the health systems and social science research group at the programme. 'People are more familiar with health care than health research - they often interpret research as something of personal benefit. They understand it less well as generating new knowledge for the benefit of others.'

As with all studies undertaken at Kilifi, a widespread consultation including a series of public meetings took place to explain the study before front-line research staff set out to obtain consent from the families and collect the blood samples. 'We have a network of 170 members, selected by the community as representatives', says Dr Marsh. Community liaison staff, themselves professionals recruited locally and led by Mr Salim Mwalukore, draw on this network to explore local sensitivities, and also keep up a constant dialogue with chiefs, village elders and trusted community members such as health workers. 'We try to make sure that any issues raised are translated into policy', says Dr Marsh, 'so that the community can see that their concerns are acted on.'

A complication emerged relating to feeding back findings to participants. If children tested positive for sickle cell disease, a serious inherited disorder, their families were told. Many parents found it easier to understand the importance of testing for sickle cell disease than the genomic study, and were confused about the main aims of the research. Moreover, the study team invited the parents of those who tested positive to bring them to a special clinic – but many failed to do so, or came once and did not return for treatment.

'We moved back to a more in-depth consultation about what was going on there', says Dr Marsh. 'We got quite a lot of answers to why people were not coming to clinic: the distance they had to travel, the waiting times, often underpinned by people not being very convinced by the diagnosis.' People around Kilifi traditionally understand symptoms of many illnesses as supernatural. 'If they came to the clinic once and their child did not get better, parents would want to try something else', says Dr Marsh. She and her team responded by ensuring that clinic staff took more time to explain the illness to parents, and the indications are that the number of follow-up visits is increasing.

'Community engagement is really a broad raft of strategies', says Dr Marsh. 'Here in Kilifi it's not just about supporting individual studies, but a programme-wide way of interacting with the community and building trust.'