Roundtable discussion: Conducting Surveillance in Hard-to-Reach Areas

OLAKUNLE ALONGE: Hello, welcome. My name is Olakunle Alonge. I’m an Assistant Professor here at the Johns Hopkins School of Public Health. And with me today I have Dr. Wakgari Deressa and Dr. Patrick Kayembe. Patrick and Wakgari, you’re most welcome.

WAKGARI DERESSA: Thank you.

OLAKUNLE ALONGE: And today we’re going to be talking, we’re going to be having a conversation, around surveillance in hard to reach populations. Patrick and Wakgari bring a whole world of experience from the Democratic Republic of Congo and from Ethiopia. And they’ll be talking about their perspective on how to do surveillance among hard to reach populations in their local. So I’m going to talk to Patrick and Wakgari now. I would like to ask you, what do you understand, or what is the role of surveillance for some of the work that you do, particularly for polio eradication? I mean, I know you could take it and we could start with Wakgari and then go to Patrick or–

WAKGARI DERESSA: Yeah, thank you very much Dr. Olakunle. I’m very happy to be here with regard to the Ethiopian context there are a lot of people who are hard to reach for this immunization program. For example, we have on the eastern part of the country in Ethiopia we have Somali region. We have also Gambela region in the Southwest part of the country. And also Benishangul in the West. And also Afar region in Northeast Ethiopia. And we have also some parts of the country, especially in [? southern ?] Oromia where it’s very difficult to get access, particularly those bordering the north Kenya and so on. So in these areas we have more than 4 million population.

And these areas are actually harder to reach in many parts due to geographic inaccessibility. And also in security issues there are a lot of problems. And the population is nomadic, or population movement is very high. And where we have a cross-border movement with Somali and Ethiopia we have also cross-border movement between Kenya and Ethiopia, between Ethiopia and South Sudan. So this population is usually inaccessible. And for this reason the polio program is focusing on these regions because there are hidden cases of polio and these areas are at risk.

And with this surveillance the government has tried a lot of initiatives with the partners, including NGOs, the core group, to identify acute flaccid polio cases so that early detection is possible, early management is possible. And we have, as you might know, we have the primary health program, which is focusing on the Health Extension Program using health extension workers.

OLAKUNLE ALONGE: OK.

WAKGARI DERESSA: So we are being a lot of things and that’s very important in terms of surveillance.

OLAKUNLE ALONGE: Yeah, that’s great to know that the government with all the stakeholders are working in Ethiopia to survey cases of acute flaccid paralysis particularly among very hard to reach population.

WAKGARI DERESSA: Yes.

OLAKUNLE ALONGE: I’m going to talk to Patrick. In your context, how is the surveillance for the polio program set up?

PATRICK KAYEMBE: OK. So in my county polio surveillance is organized as follows. So it starts from the community. So the community has to detect cases of acute flaccid paralysis and modify that to the system to the health professional that will go there and investigate and take a sample of stools to be sent to the lab so the lab can ascertain if it’s polio or not. So this system is relying heavily on community participation. So if the community is not really committed to doing this then the surveillance will fail. And now, getting back to the question of [? high risk ?] population.

So in addition to what my colleague here said, so in DRC we have a very rough area, very difficult to reach. And so a very remote area. So we have mountains, we don’t have good roads, so getting to the population is very difficult. In addition to that, we have also conflicts. So we have rebel groups that are preventing health professionals from getting to some of the population. And this makes it very difficult. So now surveillance is to help detecting every single cases of paralysis. So how do we know that we don’t have this anymore? I mean, that’s really a challenge.

OLAKUNLE ALONGE: Yeah, that’s a very point [INAUDIBLE] really around the challenges. So for conducting surveillance for acute cases of flaccid paralysis in your context. And both of you have actually begun to identify what some of these challenges are. And what I really would like you to spend some time to talk about some of the strategies that are being used to overcome these challenges in [INAUDIBLE].. So Patrick had mentioned that there is poor infrastructure, roads, inaccessibility. And you had talked about migrant population and the fact that this population are not stable. They are mobile. And they are crossing across borders. So what are some of the strategies that government and stakeholders in your country have deployed?

And I really want you to reflect on how successful have these strategies been?

WAKGARI DERESSA: Yeah.

OLAKUNLE ALONGE: I mean– I mean– Wakgari–

WAKGARI DERESSA: Yeah, thank you very much. I think I mentioned the problem earlier. And the areas that I mentioned are very peculiar in terms of many factors and in the [INAUDIBLE] context more than 90% of the unvaccinated children that are found in this area that I mentioned is Somalia, Benishangul, Gambela, in Afar regions, and also parts of the southern Oromia region. And as a national strategy the government has a primary healthcare system, which is called the Health Extension Program. And that Health Extension Program uses health extension workers stationed at the health station which is in each village. Village means site it is [INAUDIBLE] we call it [INAUDIBLE] is the lowest governmental administrative region in Ethiopia.

So in the accessible areas that’s not a problem. But in those mobile population hard to reach areas still that is a problem. And the government wants to extend this health extension program to those areas despite some challenges. And other issue, which is related to the Health Extension Program is now there is a national program which is using Women Development Army and they are at a grass root level, including high land, low land, pastoral, non-pastoral, agrarian area. And this Woman Development Army are volunteers and they live in the community. And they are working on this community awareness, social mobilization, with regard to polio, with regard to immunization, with regard to campaigns, including the surveillance and so on.

So they move from house to house and detect acute flaccid paralysis cases. And health promotion and disease prevention is one of the activities that they do. And they also work with religious leaders, elders, Christian, Muslim, in getting community involved and engaged in those areas. And the challenge is, as I said, this population is mobile.

OLAKUNLE ALONGE: OK.

WAKGARI DERESSA: And another issue, this area again–

OLAKUNLE ALONGE: If I can interject–

WAKGARI DERESSA: –insecure–

OLAKUNLE ALONGE: So you said this population are mobile.

WAKGARI DERESSA: Yeah.

OLAKUNLE ALONGE: And you have this community health workers and this Woman Development Army–

WAKGARI DERESSA: Yes, Woman Development Army.

OLAKUNLE ALONGE: –who monitor cases among this population.

WAKGARI DERESSA: Yes. Yes.

OLAKUNLE ALONGE: So do you have a scenario where these health workers follow the population as they move from place to place.

WAKGARI DERESSA: Yes, exactly. Yeah, because this area is mobile, population is mobile. And the government, the Minister of Health, has designed sort of mobile clinic or mobile services strategy with this population in the zone. Still that has a problem because this area is very scattered. This area is very lowland. Security is a problem there. And this cross border issue. But the government recognizes this problem very well. And they bring [INAUDIBLE] [? Initiative ?] with NGOs, with [INAUDIBLE],, with UNICEF, and with polio eradication partners to get these workers and to reach the area. And also they do with two government collaborations, for example, with Somalia, part with Guinea, part with South Sudan part and so on.

So cross-border collaboration is becoming very common now in Ethiopia. Not only for polio but also with South Sudan we have the issue of this Guinea worm eradication where there are cases in parts of South Sudan and parts of Gambela region in Ethiopia. So we don’t know the source of the infection but still there are cases. So polio is like this, similar.

OLAKUNLE ALONGE: Thanks a lot. And this is really very insightful. So it’s really the use of community health workers and, specifically, women who are really at the front line. Not just solely to provide services but also to collect data for surveillance. So we’ll come back to thinking about the sustainability of this measure in [INAUDIBLE]. And I would like to talk to Patrick and to our audience. What are some of the strategies that have been deployed in the Democratic Republic of Congo for overcoming some of the issues around surveillance in hard to reach population.

PATRICK KAYEMBE: Yeah, so as we know the surveillance system is relying heavily on the community–

OLAKUNLE ALONGE: That’s right.

PATRICK KAYEMBE: –health worker. So in the DRC these people have been trained to do the surveillance exactly. To recognize cases of acute flaccid paralysis and to notify the system. And then they get supervision from health worker in the area. So they supervise the work. And mostly communities have been given incentives.

OLAKUNLE ALONGE: OK.

PATRICK KAYEMBE: So, so–

OLAKUNLE ALONGE: Can you clarify what you mean by incentives?

PATRICK KAYEMBE: Yeah, incentives that’s– once you notify cases to your bureau you’re going to be rewarded. So in terms of money. So we give you some money because you notified. And then most have been trained in how to collect stools so [INAUDIBLE] that problem. And now in addition to that they have been giving some of this can be viewed as incentive also being given technology, a telephone. So if there is a case they can notify they take it to the health system. So using a phone and now getting the phone is something that is viewed by the community as a reward. And so they can use that phone to call but mostly to do the job to notify of cases.

So one of the problems is getting the stools to the lab in time. And so we have seen delays of stools getting to the lab. And then they’re not appropriate for–

WAKGARI DERESSA: Testing.

PATRICK KAYEMBE: –for testing. And that’s not the with the telephone [INAUDIBLE] so that system’s improving notification.

OLAKUNLE ALONGE: Excellent. I think this is really great. These [INAUDIBLE] ideas are complementary. So we have technology, mobile phone, training, been deployed in the DRC to ensure that surveillance is maintained. And then we have use of more traditional healthcare providers and community health workers who collect data. So I would now turn it around and ask you, Wakgari, to comment on how sustainable is what Patrick has said. It’s also giving people money incentive to collect data and giving people phone to do the reporting. And then I want Patrick to reflect on the strategies in Ethiopia in terms of having women following mobile population to track cases of acute flaccid paralysis. How do you think– how sustainable are each of the strategies?

WAKGARI DERESSA: Yeah. Yeah, maybe one thing that I would like to add on the previous–

OLAKUNLE ALONGE: OK.

WAKGARI DERESSA: –strategies that we have is in addition to the government initiative and the community initiative we have also the core group polio program which is using community volunteers surveillance person specially trained for this polio AFP in those areas of Somalia, Benishangul, Gambela some parts of Oromia in Afar regions. And I think since 2003 more than 4,000 community volunteers were trained and deployed in those parties and they are called community volunteer surveillance focal persons.

OLAKUNLE ALONGE: OK.

WAKGARI DERESSA: So in the area– and I think that program is still working and there are some sustainability issues there are some drop outs there.

OLAKUNLE ALONGE: OK.

WAKGARI DERESSA: But still the program is going well by training, by recruiting more new volunteers and so on. Maybe with regard to the issue of this incentive for data collection. I think the idea is nice, it looks good the idea of this mobile tracking is using the technology is also very nice. Maybe if there is a strong support either from the government or from the partners that may be good but sustainability, as you mentioned, that is the problem. And maybe in some areas if there is incentive– I don’t know, maybe there is over-reporting or something like that. If we do all that and monitor everything.

And if you manage the issue of false reporting or over-reporting I think the program would be fine. But with this incentive we haven’t tried in Ethiopia.

OLAKUNLE ALONGE: Yeah. Thanks. So it seems that Wakgari did try to justify, I mean, provide some justification for sustainability for the community, use of community health workers for data collection. And wasn’t so convinced that it’s really sustainable in the long run to provide monetary incentives for data collection. So I really want to– what do you think about his perspective, Patrick?

PATRICK KAYEMBE: Yeah. He mentioned that– so what I can say is that women are very good as community health worker. They stay longer, they do their job. But in these cases of following a refugee, a mobile population wherever they go that might be very difficult. So I think that the idea might be to identify among mobile population themselves, women that can do the job. Because they are going around. So women who are married and so have family they cannot be able to be following them everywhere they go. So if you can identify women among the mobile population and train them as community health worker this can be sustainable.

WAKGARI DERESSA: Maybe to add on that?

OLAKUNLE ALONGE: Yes, please.

WAKGARI DERESSA: I think this hard to reach population still hard to reach areas are still unreachable in many parts of the country. When we are seeing in the [INAUDIBLE] context when we are saying mobile population usually in the case of the nomadic population all family they don’t move at the same time. So women and especially children they stay in the village then the adults, then the older young adolescents move with their fathers. And they go with a pasture to find water to find pasture for their livestock and so on. So when the rain comes and when the grass is ready at the original village then they go back to the original village.

Still the woman and the children they are there. So they are not moving with this–

OLAKUNLE ALONGE: Population.

WAKGARI DERESSA: –adult population the men and the older guys and so on. So that’s the issue. But I went to emphasize that it’s still hard to reach areas. There are areas which are still unreachable.

OLAKUNLE ALONGE: Despite all of these strategies.

WAKGARI DERESSA: Yes. And there is poor reporting. Because the literacy rate is very low in those areas. And the women, even if they are engaged, there are some sort of understanding of data, the quality issue, and also the pastoralist way of life itself. The attention to the woman. Like, for example, the husband is usually in those areas. They may not be happy while their wives are working with the government and so on, go to the training, participate in workshop, or something like that. And so that is a problem still. Knowledge and skill gaps, not only of the woman, but of the front line health workers is also a problem. They don’t get adequate training every year, every time.

And they don’t have frequent updates from the high level, for example, in terms of training, in terms of skill, in terms of new initiatives that’s going on and so on. So the problems are still there and, yeah.

OLAKUNLE ALONGE: Thanks I mean this is helpful. I don’t know– we’re going to be rapping the conversation. I do like you to think about the long term view. So it seems that yes, surveillance is really important for public health program. And we’ve seen it in the case of polio. That it’s really important for us to be able to track the cases of acute flaccid paralysis. So that we’ll be able to know whether our program is successful or not in reducing the numbers. And there are specific challenges in different parts of the world in terms of reaching every population with the view of collecting data and collecting information on cases of AFP. I think this challenge is not peculiar to AFP.

I think it’s applicable across other public health program, particularly around contagious infectious diseases. So a lot of lessons that we are talking about today I believe they are applicable to other types of programs and their strategies and their challenges. So we’re going to conclude now. And I would like to reflect on what is the long term solution to addressing challenges for the surveillance among hard to reach population given that some of the challenges around community health workers, use of community health workers, payment of monetary incentives. We have seen from our conversation that they might not be sustainable in the long run. So in your view, first Wakgari and then to Patrick, what do you think is the long term solution?

WAKGARI DERESSA: Yeah, thank you very much. I think there is a challenge as you have said in terms of making this initiative sustainable.

Over the last years we have learned that the engagement of the community, especially it’s religious leaders in those areas is particularly very important. Because there is also a kind of community fatigue or community hesitance about the vaccination, the immunization. And when we are working on involving religious leaders through church or through mosques I think the community participation is becoming strong and that [INAUDIBLE] the knowledge of the people is becoming strong and they are actually demanding for the immunization program. So that’s one thing. And the other thing is that the government with its partners should extend, should strengthen, this initiative into the grass root level and so on to maintain sustainability. Despite there are hard challenges as we can see.

OLAKUNLE ALONGE: Thank you very much. Patrick.

PATRICK KAYEMBE: Yes, I think that the most important, as my colleague said, is that having the community engaged. So the community has to take responsibility of it’s own health. So if this happens, the point of incentivizing the community will no longer be there. Because they’ll take responsibility for doing whatever it takes to have the community healthier. So the example of this is, like I would say in [INAUDIBLE] it’s the community themselves that identify people who go and get the drugs and then they’re going to have the distribution of [INAUDIBLE] among the community. And they’re doing it without being paid. So community engagement, taking responsibility, is the key for sustainability.

OLAKUNLE ALONGE: Thank you so much. I mean, this has been a very inciteful conversation. And I really want to appreciate both of you for sharing with us your wealth of experience in doing surveillance among hard to reach population in your community. It’s indeed going to be left to the community. But [INAUDIBLE] like you said, are quite important to sustaining any public health activities including surveillance among communities and population. So thanks a lot. We really appreciate the time and the conversation.

WAKGARI DERESSA: Thank you so much.

OLAKUNLE ALONGE: Yeah, you’re welcome. To our audience we really appreciate your attention and your time. We hope that this has been helpful in understanding more some of the practical challenges to doing surveillance among hard to reach population. So until another time, goodbye.

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