Trust the people
When remote communities are in charge of distribution, malaria treatment, bednet coverage and TB detection rates double, and vitamin A coverage increases - even though the distributors are unpaid - says a multicountry study.
Drug delivery techniques long used for river blindness now appear to work for other diseases as well - and in combination. For simple interventions desired by the community, integrated Community-Directed Intervention (CDI) looks like a winner.
>By Robert Walgate (May 07)
Dar es Salaam – From experience with a neglected African disease, cared for only by the African Programme for Onchocerciasis Control (APOC), is coming the means to prevent and treat malaria, and deliver other care such as vitamin A to prevent childhood blindness.
This was what the APOC Joint Action Forum heard recently with increasing excitement in Dar es Salaam, Tanzania, when TDR, the Special Programme for Research and Training in Tropical Diseases, reported on its first two years’ trials of “Integrated Community-Directed Intervention” – CDI – in Uganda, Tanzania, Nigeria and Cameroon.
But delivering DOTS for TB may require more complex solutions, and antiretrovirals for HIV/AIDS were not tested - as they were not available to the communities in the study.
For several years the communities have already been distributing the drug ivermectin to prevent river blindness, using the ten-year old method of “Community-Directed Treatment with Ivermectin” (ComDT), where they select their own distributors from among their own most trusted people.
For the trial, communities were asked to continue with ivermectin and take on the extra burden of distributing home-based management of malaria, insecticide treated bednets, and vitamin A, and to detect TB cases and provide them with DOTS treatment. Distributors were unpaid. Their delivery rates were then measured and compared to control groups where existing delivery methods were used.
Two years into the three-year trial, the results are that in the Community-Directed Intervention areas:
- Malaria home management coverage doubled
- Bednet coverage doubled to quadrupled
- Vitamin A coverage was significantly higher
- TB case detection rate doubled
- However DOTS treatment completion did not increase, at least by this stage in the trial.
There had been concern that the extra burden on the community of delivering new interventions would affect ivermectin coverage, but the results showed that instead of falling, ivermectin distribution actually increased, probably due to the increased contacts distributors were having around the community dealing with other diseases.
Richard Ndyomugyenyi, who is Principal Investigator for the study in Uganda, explained to RealHealthNews:
“Basically we are looking at five interventions. We are doing the studies in places where we are implementing ComDT with ivermectin for onchocerciasis control. On top of that we are adding on different interventions in different districts to see whether the distributors can cope. Each year we add on an intervention, like home management of malaria, in one district; in another district we add on vitamin A; in another, insecticide treated bednets; in another DOTS for TB. The second year we add on a different intervention in each district.
“Now we have finished two years, and it is quite clear that this process increases coverage for most of the interventions – and even substantially increases coverage for ivermectin, which is quite interesting. Because initially it was thought that if you add on more interventions you would compromise ivermectin coverage, but that’s not the case.
“The main reason this works seems to be that this process [known as ‘CDI’ for short] empowers the communities to own the process and the programme. So they actively participate in deciding how these interventions should be delivered – so they take an interest in their own programme, and it increases coverage.
“ComDT for onchocerciasis started a long time ago in the 1994, pioneered by TDR. We made a study in Uganda and reported in 1996; and based on that study, APOC adopted the ComDT strategy. The alternative method was to distribute ivermectin using health workers. But health workers are very few, they haven’t time to go round all the villages distributing ivermectin – it would compromise the rest of their health services.
“What is interesting in this approach – and I think this is the fundamental thing for people to understand – is that once you empower the communities to take care of their health, and you educate them properly on what they should be doing, they will actually do it.
“For example, people had always been organizing themselves to bury their relatives when they died. They do it themselves, they don’t ask health workers to organize that. It’s similar with these health interventions. Once you educate them about what they should be doing, they will organize themselves and do it.
“There is a great capacity in the community which we are not tapping! This is real, working primary health care,” said Ndyomugyenyi.
“In Uganda it works like this. We have kinship structures. In a village you might find four or five such groups. So the community makes selection of the distributors along those kinship lines, and each kinship group has its own distributor. As a result this person doesn’t have so many to treat, and he doesn’t have to go long distances. Also he is treating his relatives.
“Some people have said that we should give incentives. But I ask a community distributor, ‘do you want incentives to give to your wife? To your brother? To your grandfather?’ He just laughs! And it is working well.
“The ownership is the critical thing. Elsewhere, the home management of malaria, for example, adopted the structure but not fully. You find in most cases that they appointed the distributors, and they were not selected by community members.
“The selection of the distributors is actually the key. If the community doesn’t appoint them you are going to get problems.
“For example, the distributor might be appointed by the village chief just because he is a friend, but this person might not be a good neighbour to you, stealing people’s chicken and potatoes – so you don’t want to allow them to come to your home.
“But when the community has collectively sat down and selected some people, those people are trusted, and they know that they are going to do the work efficiently.
Elizabeth Hassan, Principal Investigator for the CDI study in Kaduna State, in North-Central Nigeria, reported similar success in Nigeria.
“The study went well, particularly in 2006 as we had a reasonable supply of materials: nets, antimalarials, and vitamin A, to both the study and the comparison arms,” she told RealHealthNews.
“But it became obvious that it’s not enough to supply the materials. The distribution method is crucial. In the comparison arm, the materials were given to the health system. But in the focus-group discussions and in-depth interviews, people in the communities said that they didn’t even know the materials were there.
“But in the study arms where communities were engaged and empowered, the distributors were told the supplies were available, they went to the health facilities to collect them, and they went back to the communities and announced to the people that distribution would be done. That’s why the results are good.
“It’s all to do with the CDI process. If the health conditions you are improving are seen as a problem, once you empower people, and they realise it is for their own benefit, it becomes a priority for the communities.
“To choose the distributors, usually you have two sets of meetings. The first is with the community leader and the elders in the community. You introduce the procedure to them and tell them the benefits, help educate them with posters, etc., and tell them what their roles and responsibilities would be, and the roles and responsibilities of the health service. Then you agree the date for another visit where you would meet the whole community and repeat that same process. And after that you leave them to select their own volunteers.
“Usually you suggest that they need people who are resident in the community, who have been there for some time, who are honest, hard-working, and willing to work for the community. Then you leave that decision for the community to take.
“There were more males chosen than females. Some communities picked people who were already distributing ivermectin, because they said they had experience; others selected entirely new people. Some were young, some older. They chose individuals, people they respected, people they knew could deliver.
“I thought that this would succeed, given the years that we have distributed ivermectin this way. But I didn’t really expect what I saw when I went to the communities with the distributors to see the antimalarials - it was very, very gratifying and fulfilling.
“Because when we started we made a baseline study and asked the communities what their priorities were; and malaria came up very high. So for once we’ve been able to met the needs of the communities. That is a major achievement.
“The way it works is that the distributors go to the next level up. The communities are supposed to provide transportation. In some communities people volunteer their bicycles, or their motorcycles, for the volunteers to go and collect the drugs.
But the distributors get no payment for this work. So why do they do it?
“Some of them come out and say categorically we do it because we want to help our community. They say ‘we know this community has a problem with malaria, and we want to help solve that’. Sometimes you hear people say, ‘Oh, my community doesn’t give me anything, but they pray for me’. Sometimes they say that if when they are distributing they come to houses where people are eating, they offer them food.
“It also gives them some respect, and in the past we’ve had volunteers who because of their role in distribution of ivermectin have become councillors and politicians, they have become so popular!
“Distributors by kin group, as in Uganda, would make it much easier – we haven’t had that yet in Kaduna. It’s a matter of numbers. We are trying to get them to nominate as many people as possible, so the workload will be reduced.
“There was a fear that it would make ivermectin coverage fall. But this whole study has shown that this is not what happens. The coverage even went up. For me that is very gratifying.
“And that should also interest donors, partners and programme managers [to APOC] – that we have something that will help us sustain [ivermectin] delivery. Because most of the communities have been distributing ivermectin for 10-15 years, and the signs and symptoms of disease are gone, so you really need something to keep them interested.
“Ivermectin distribution went up, because it is the communities’ first contact with community directed treatment, so the communities knew that if they responded to that better, a lot of their cares in terms of other diseases would be taken care of too.
“They even said it to us ourselves. One woman said to us, ‘You’ve given us river blindness control drugs, now you are giving us antimalarials that really help our children in this community, and you are also providing vitamin A that prevents blindness. We are very pleased about it’.
“So the programme is generating enthusiasm, and that was what bothered us in the first year, at our debriefing meeting, because we had built up this enthusiasm – but the supplies were not there in the health system. So the critical factor, the supplies, have to be there.”
Hans Remme of TDR, who managed the initial studies on ComDT for onchocerciasis in the 1990s, told RealHealthNews: “It’s quite a breakthrough.”
The study was conceived to solve a dilemma, he said. “ComDT was working so well [in delivering ivermectin], there was a lot of interest in using it to help health care in Africa by applying it to other diseases. On the other hand there was concern in the oncho community that this would overload the system. So we needed to discover the limits.
“Before we began this study, we had a lot of discussions with other disease programmes, countries and so on, on what really needed to be researched. And after long discussions, we basically came to the conclusion that what we wanted to find out was how complex we could make ComDT.
“Complexity we defined in two ways: one is the complexity of the different interventions. Ivermectin, and albendazole for filariasis are quite similar. Praziquantel for schistosomiasis is maybe a bit more complex; vitamin A, nearly the same thing.
“But then we saw at the country level much more interest to go far beyond just using this for mass treatment. Countries were seeing this more and more as truly an extension of their primary health care system. So we were led to look at other interventions, for things like malaria.
“Also we had information coming from communities – they said we like ComDT, but please do it for malaria. We heard malaria, malaria, malaria.
“So we selected five different interventions to test out in real life. We are staying for the moment where there has been experience, where there are ongoing ComDT programmes. And to that we added one intervention very similar to ComDT, vitamin A; one more difficult, mass distribution of bednets, involving behaviour change; and then two interventions in the direction of case management – home management of malaria, and DOTS for TB.
“The selection was of things that are already there at community level. ARTs for HIV/AIDS, for example, were not there. What we are talking about is taking an existing programme, and putting the community in charge.
“The community takes it very seriously, and has full ownership and direction. Many other community interventions are actually external programmes, using one or two community members to help with their programme. The real difference here is that the community decides how they want to go about it.
“The communities decide who are going to be the distributors. I think that is the critical thing. Because the communities know best who is reliable, who is going to deliver…. It’s often people who are already playing a key role in the community.
“It tends to be more males that females. At one point we tried to improve the gender balance, but the women said we already do all the work here, and now you want us to go house to house and deliver the drugs! That was an external pressure which we don’t impose any more.
“This becomes a kind of extension of the health system, which has to provide once a year all the drugs the distributors need.
“One thing that comes up very much in discussions is the question of incentives… Different programmes [outside APOC] have different approaches… We really insist that the communities discuss the issue of incentives, and make up their own minds. The distributors are going to be doing all this work for them and it’s the communities’ responsibility to take care of.
“If they do decide on an incentive, it’s usually not monetary, but in kind. But most people say they really do it because they are keen to help their community. And of course it also boosts their own morale and status.
“The problem comes when other programmes offer financial incentives. That creates trouble,” said Remme, “as the ComDT distributor sees someone doing less work for another programme and getting paid. So we are now trying to get some agreement and standardization among programmes.”
TB is also proving to be more of a problem for CDI than the other diseases. Detection rates doubled in the study areas, but DOTS treatment did not go up. Distributors may have been affected by the widespread prejudice against TB patients, and fear of catching TB. Some asked for vaccinations before they would enter patient’s homes. So for improving DOTS delivery it may be that extra measures will be necessary.
However, according to Elizabeth Hassan, more time is needed to be certain of this because DOTS treatment lasts eight months. The whole study will be reported later this year.
From research to policy-making
The world of river blindness – a neglected tropical disease of fast-flowing river valleys, most in West Africa – is relatively closed. What happens when river blindness experts come to one of the big health divisions at the Ministry of Health, like malaria, to be told how to deliver their treatments? How do they receive that?
“Well, I have an advantage compared perhaps with some other researchers - I am also a member of the senior management at the Ministry of Health in Uganda!” said Richard Ndyomugyenyi, Principal Investigator for the study in Uganda.
“So all these other programme managers are my colleagues. And we meet almost on a daily basis. So when I sell them an idea in a meeting, with evidence, then they buy it!
“So this is why this study is so important – these are results – we are not talking from out of the blue! These are the facts, this is what we have found in our study.
But for the communication, it is also important that it is someone from the ministry telling the story, says Richard Ndyomugyenyi. If another researcher came in from another agency, from another country, and told officials that this was wonderful and here are the results, it would not be received so well.
“It would be received, but there would be a big hurdle to jump over to convince them. What we have here is health systems research. If the research does not include the implementers, right from the planning, constantly updating them on the findings, and they just come with a report at the end of the day, it is difficult for these guys to implement the results.
“But if we involve them as stakeholders right from the beginning, and they are following up what you are doing, it becomes easy for them to implement, because those results would also be theirs.”
When CDI works
Community-Distributed Interventions work when:
- The disease is perceived as an important health problem that affects all sections of the community
- An intervention is available that is relatively simple to implement
- The intervention has a clearly perceived benefit
- Implementation of intervention is under full control of the community implementers
- Intervention materials are made adequately accessible to the community
The most critical factors are:
- Community empowerment
- Regular, adequate and timely supply of materials to be delivered