In your presentation at the first East African health and scientific conference in Kampala, you stressed the issue of involving communities in sett ing a national agenda for health services and health research. Why is it important to involve communities?

There is an old English saying that it is the wearer who knows where the shoe pinches. Similarly, communities (groups of people in society that are affected by common health issues) are in the best position to identify and even prioritize their health problems. By working with them, we – researchers and the scientific community – can identify their felt needs, and from that arrive at a relevant health research agenda.

Why now?

There is currently great interest among northern and southern researchers in research on, for example, what is called ‘diseases of poverty’. At the same time many researchers wish to do research for the sake of advancing knowledge – as though ‘the end justifies the means.

Researchers and operational health workers have been telling many communities what their problems are, and bringing them seemingly ready-made solutions, without involving these users at all in the investigation of what their problems are.

This approach can lead to problems, yet many health workers and other change agents continue to insist on pushing failed approaches. There is clearly a need to make a U-turn in the way we identify community needs, and how we address them. Involving communities in setting an agenda, will build a sense of ownership, and promote community participation in solving the health problems which affect them directly and which they have identified.

How do you think this can be done in a meaningful way, avoiding the past practice of ‘tokenism’ where, for example, one community member/NGO person is the ‘representative’ for an entire national priority setting process?

I believe there are priorities at different levels and communities. At the national level there is interest in setting policies and developing guidelines that set the direction for the entire country. At the intermediate and community level, the main focus is to translate national guidelines to suit local needs and interests. Participating communities, say at village level, after identifying their problems would work with operational health staff to seek guidance to adapt and apply the national guidelines to specific local needs.

What communities are we referring to here? The tendency in research is to generalise that communities are groups of people with little or no education, poor and ignorant of their health problems? Who would be good representatives of community?

Reading between the lines, I trust you are referring to communities at what we used to call the ‘peripheral’ level. Even here there are opinion leaders, there are change agents. There is almost in every village, a village primary school with its complement of teachers; there is often a village dispensary or a rural health aid kit taken care of by village health worker. There are also local courts, religious leaders, and many more informed and educated members who are in tune with the needs of the community. People with little or no formal education are very much aware of their own and the communities’ needs and interests – in most cases more so than a researcher or policy specialist who pays a short visit to find out what the local situation is.

Can you give examples of where communities have been involved in defining or doing research that has made a difference to the national health plan?

Yes there are many examples. A well known example is Ifakara Health Research and Development Centre in Tanzania. Working with researchers, community members identified haematuria (blood in urine in schistosomiasis) as a major local concern. By involving communities in surveys, haematuria prevalence and therefore urinary schistosomiasis was efficiently mapped more quickly and at reduced cost. Communities – working with guidance from researchers – were able to control disease foci using a local herbal molluscide.

Another example, from Kenya and Ghana, shows that bancroftian filariasis treatment coverage by communities working with research groups reached treatment levels sufficient to eliminate the disease, whereas treatment through the established health system did not. Treatment of river-blindness (onchocerciasis) control experiences in West Africa is another effective example of the active involvement of community members in research and treatment.

What is your ideal scenario for involving communities in Africa in setting the research agenda? What would be a successful outcome for involving communities in research?

Communities working with researchers discover a health problem as their problem. Researchers working with local disease control groups and opinion leaders identify appropriate control tools. Disease control groups dispel common notions of despair.

How should donors and their programmes better align to have health research focused on community issues?

Donors bring significant funding to countries for health research and health sector improvement, and as a result have an influence over the situation. This gives them the unique opportunity – or responsibility – of ensuring that the research they fund is aligned with national health and health research priorities set by the country; and that there is coordination between donors working in a country so that all investments support the national plan – irrespective of who will be doing the research.

Donors quite often work with national ministries of health and national research institutions. I think donors should target a good portion of their funding towards demand-driven research, at different levels of society, and actively seek input and involvement of communities as a requirement in most research projects.

Research collaborators from developed countries need to:

• Learn to respect a community’s well-being and views, and those of their southern research partners. * From the beginning, they should build a sense of trust, setting out to identify research problems together with the community, not coming in with a pre-cooked research project and agenda. They should develop a research agenda together with the southern partner, and avoid imposing their research agenda on communities or national researchers.
• Do research in countries and communities that is in line with national or institutional research priorities and agenda set by the country.
• From the start identify community and institutional needs, and include genuine capacity building in their plans.

What can other actors (i.e. government, research agencies, NGOs) do to ensure that research is focused on the needs of communities and specific groups in society, and that there are engaged in research?

They should involve communities in identifying their health problems, and then assist them to implement appropriate disease prevention and control measures, then the monitoring and evaluation of these interventions.

What skills do community members need to develop to participate effectively in research? How can researchers, donors and policy makers better work with communities?

Unfortunately community members are the weakest link in the research process, as they are often in desperate situations, and are likely to be exploited, especially by researchers who may – for example – do research in a community that is not a priority for them, or likely to benefit them. So there is a significant responsibility on researchers to help communities to overcome their weaknesses by for example negotiating that the study communities receive specific benefits from their participation in the research.