Stronger Together: Evidence for collaborative action on NTDs.

Kim Ozano: 00:00:04

Hello and welcome to Connecting Citizens to Science, a podcast about connecting people and communities to science and research so that we can join forces to catalyse sustainable global change.

Kim Ozano: 00:00:15

I'm Dr.

Kim Ozano: 00:00:15

Kim Ozano and in this episode we will be hearing about a seven year research programme known as Countdown.

Kim Ozano: 00:00:21

Countdown consisted of multidisciplinary research teams across Ghana, Liberia, Nigeria, and Cameroon, and they used co production research approaches to improve the equity and efficiency of health systems interventions to control and eliminate seven neglected tropical diseases.

Kim Ozano: 00:00:40

Research was implemented at each of these health systems levels; from policy to community, and it's all documented in the Journal of International Health.

Kim Ozano: 00:00:49

It's a special supplement entitled Stronger Together, Evidence for Collaborative Action on Neglected Tropical Diseases.

Kim Ozano: 00:00:56

This supplement is really useful in that it tells the story of how the programme engaged with people who had lived experience, they engaged with health workers and policy makers, and it really emphasises the importance of togetherness.

Kim Ozano: 00:01:09

So, today, we have Dr.

Kim Ozano: 00:01:11

Luret Lar, who was the programme manager employed by Sightsavers Nigeria, who is a collaborator on the Countdown programme.

Kim Ozano: 00:01:18

We have Karsor Kollie, who is the programme director for neglected tropical diseases at the Ministry of Health in Liberia.

Kim Ozano: 00:01:24

And we have Laura Dean from the Liverpool School of Tropical Medicine, who was the social science lead for Countdown.

Kim Ozano: 00:01:31

Laura, welcome to the programme.

Kim Ozano: 00:01:32

Tell us a little bit about yourself and Countdown, this wonderful programme across countries.

Laura Dean: 00:01:37

Thanks, Kim.

Laura Dean: 00:01:38

Hello, everybody.

Laura Dean: 00:01:39

Um, nice to be chatting with you all today.

Laura Dean: 00:01:42

So Countdown was a seven year research consortium, um, led by the Liverpool School of Tropical Medicine and funded by the Foreign and Commonwealth Development Office through UKAID, um, which was the Department for International Development at the time.

Laura Dean: 00:01:58

The project, as you mentioned, Kim, was focused across four countries, so Liberia, Nigeria, Ghana, and Cameroon, and the main purpose of the project was to try and improve equity, and advance progress towards the control and elimination of neglected tropical diseases, and particularly those that are amenable to what's called preventive chemotherapy, so that means, they can be treated through mass drug administration approaches, which normally, um, through giving out one or multiple tablets to populations on a large scale.

Laura Dean: 00:02:31

The different countries in Countdown were chosen because they're all at different stages of disease control and elimination, for the five PCNTDs that we focused on to begin with.

Laura Dean: 00:02:42

And so there are things like schistosomiasis, onchocerciasis, soil transmitted helminths, and lymphatic filariasis and trachoma.

Laura Dean: 00:02:52

At the start of Countdown, we were really focused on learning between countries at different phases of disease control and elimination.

Laura Dean: 00:03:00

And then as we moved through Countdown, we kind of learnt from each other and also focused to try and think about disease management, disability and inclusion, um, for the kind of chronic and long term impacts of some of these neglected tropical diseases as well.

Laura Dean: 00:03:17

We partnered across the four countries with the Ministry of Health, National Neglected Tropical Disease Programmes and that's where Karsor played a critical role in Liberia.

Laura Dean: 00:03:28

And then we also worked with universities, um, and other stakeholders such as Sightsavers, um, where Luret is from, to create a space for evidence informed practice in the different countries.

Kim Ozano: 00:03:40

Thanks very much, Laura, for the description of Countdown.

Kim Ozano: 00:03:43

It sounds like the supplement really captured a lot of these lessons.

Kim Ozano: 00:03:46

Could you tell us more about the supplement and what we can expect to find there?

Kim Ozano: 00:03:50

The special supplement that's in International Health, that came out earlier this year is really focused on the last two years of learning from Countdown within Nigeria and Liberia, drawing together different projects that centered co-production to draw generalisable learnings together that align to the different pillars within the new WHO's roadmap to kind of synthesise learning for other countries, other settings, and the settings where we worked moving forwards.

Kim Ozano: 00:04:18

So you'll find specific articles around, um, strengthening primary health care responses to female genital schistosomiasis, increasing case detection for skin NTDs, and improving the kind of well being of community health workers delivering NTD interventions during the COVID 19 pandemic, as well as a kind of synthesis of a lot of the work we did around strengthening participatory design of mass drug administration programmes.

Kim Ozano: 00:04:48

Um, particularly centered on improving equity of those programmes from a kind of gender and disability inclusion perspective.

Kim Ozano: 00:04:55

The commentary within the supplement brings the learnings together from across a very wide, diverse range of, of projects to really showcase that if we are true to participatory health research principles, that can really support us to achieve the goals and the pillars that are outlined within WHO's roadmap.

Kim Ozano: 00:05:16

Thank you very much.

Kim Ozano: 00:05:16

I think that sets us up nicely.

Kim Ozano: 00:05:18

Let's welcome Luret to the conversation.

Kim Ozano: 00:05:20

Luret, do you have something to add around this WHO roadmap?

Luret Lar: 00:05:24

A question to ask Laura.

Luret Lar: 00:05:26

So thank you very much, Laura.

Luret Lar: 00:05:27

I think you mentioned PCNTDs.

Luret Lar: 00:05:30

Could you please elaborate on what you mean by PCNTDs?

Laura Dean: 00:05:34

Yes, so, internationally, neglected tropical diseases are broken down into different categories.

Laura Dean: 00:05:41

And so preventive chemotherapy, or PC neglected tropical diseases are those that can be controlled by mass drug administration.

Laura Dean: 00:05:49

That means you can give tablets en massed to populations, to reach certain thresholds that would contribute towards the control and elimination of those diseases.

Laura Dean: 00:06:00

Other categories of diseases, so things like leprosy, buruli ulcer, things that are now grouped together more as skin NTDs, often need kind of longer term interventions.

Laura Dean: 00:06:10

So things, um, like disease management, disability and inclusion strategies.

Laura Dean: 00:06:16

At the beginning of countdown they were things we weren't really thinking about, but towards the end we had a much more holistic approach, um, and thought about diseases along that whole, um, kinda continuum of care.

Kim Ozano: 00:06:30

Thanks very much.

Kim Ozano: 00:06:31

It sounds like it's been a really interesting evolution over time.

Kim Ozano: 00:06:34

So, Luret, you were, uh, part of the Countdown programme in Nigeria.

Kim Ozano: 00:06:40

How was this research programme and the co-production approach different to other, uh, research programmes that you've been involved in?

Kim Ozano: 00:06:47

Because I understand you're also a medical doctor as well, so you had that kind of cross discipline viewpoint.

Luret Lar: 00:06:53

For Countdown, this was an implementation research, and what made it special, as Laura mentioned, is that it was initiated by the needs arising from the neglected tropical disease programme implementation.

Luret Lar: 00:07:08

So in Nigeria, what did we do?

Luret Lar: 00:07:10

We didn't just go straight into the field.

Luret Lar: 00:07:13

We conducted a situation analysis.

Luret Lar: 00:07:17

We wanted evidence to be synthesised to back our research in the country.

Luret Lar: 00:07:24

And when we conducted the situation analysis, we took a bottom up approach.

Luret Lar: 00:07:31

Every set of stakeholder in the programme was involved in this evidence synthesis.

Luret Lar: 00:07:38

So from the evidence synthesis, we found out a lot of challenges in the implementation programme, but together with all the stakeholders and the researchers, we prioritise these gaps.

Luret Lar: 00:07:53

Top among them was community engagement.

Luret Lar: 00:07:57

We found out that, initially, there was a community directed initiative or approach to selection of implementers at the community level, but issues arose around competing interests and other needs of the community that created a gap in this selection.

Luret Lar: 00:08:18

Now, other gaps we found out had to do with the implementers in the front line.

Luret Lar: 00:08:23

They were demotivated because of some issues like incentivisation, not just in terms of monetary incentivisation, but on other work related issues.

Luret Lar: 00:08:37

For example, we found out that most of the implementers at the front line were using out of pocket expenditures to run the programme.

Luret Lar: 00:08:48

Now, other gaps that we also noticed was in the country, it was difficult to say how much it costs to implement the programmes.

Luret Lar: 00:08:57

So the financial running of the programme and the systematic issues came up, um, top in our priority.

Luret Lar: 00:09:06

Now what made it very special for us in Nigeria is this was context specific.

Luret Lar: 00:09:12

And as I mentioned earlier, it was a bottom up approach.

Luret Lar: 00:09:16

So power imbalances and issues around positionality were actually tackled, or we began to tackle, those at that level.

Luret Lar: 00:09:26

So we worked with these stakeholders to co-develop and provide solutions.

Luret Lar: 00:09:32

So in summary, we took a bottom up approach.

Luret Lar: 00:09:35

We involved all the stakeholders to prioritise our needs in programme implementation and co-produced and proffered solutions together.

Kim Ozano: 00:09:44

Wonderful.

Kim Ozano: 00:09:45

It sounds like a very holistic programme.

Kim Ozano: 00:09:47

So the implementers that were part of the research, were they within government at different levels?

Kim Ozano: 00:09:52

Is that who you would term as an implementer?

Kim Ozano: 00:09:55

Yes, they were implementers at the national level.

Kim Ozano: 00:09:59

They were also implementers at the sub national level and the local and community levels.

Kim Ozano: 00:10:05

So, for example, we had people working in the state Ministries of Health that were implementers, but also researchers.

Kim Ozano: 00:10:13

They were involved in developing the programme, collecting and analysing data with the research team.

Kim Ozano: 00:10:21

That sounds very unique and smoothly transitions us to Karsor.

Kim Ozano: 00:10:25

Karsor from the Ministry of Health in Liberia.

Kim Ozano: 00:10:27

Welcome to the show.

Kim Ozano: 00:10:29

Does this resonate with your experience in Liberia as part of the programme as well, this bottom up approach and implementers also acting as researchers so they could connect with people a little bit better to understand the problems?

Karsor Kollie: 00:10:41

Thank you very much, Kim.

Karsor Kollie: 00:10:42

So certainly it does.

Karsor Kollie: 00:10:45

Basically the impact of the co-production were in many aspects.

Karsor Kollie: 00:10:51

Firstly, the co-production did help to enhance transfer of knowledge among us, even the implementers and that of the researchers.

Karsor Kollie: 00:11:03

Uh, it did help to also enhance ownership.

Karsor Kollie: 00:11:06

The fact that we were part of the planning and the implementation, including the research, also give us the edge in terms of, uh, taking ownership of the findings that we have, that they help to shape some of the strategies that, that, that we were using in implementing, um, the Mass Drug Administration.

Karsor Kollie: 00:11:29

So, so basically the aim was for us to, to be able to get the evidence that we have to shape the method and strategies we are using so that we have equity, uh, in the service delivery.

Karsor Kollie: 00:11:46

And we were part of the, uh, somehow part of the research and then the implementation.

Karsor Kollie: 00:11:51

So that gave us the edge.

Karsor Kollie: 00:11:53

And it did help reduce, uh, the challenges of dissemination and then policy change because we were part of the process.

Luret Lar: 00:12:05

In Nigeria, our researcher implementers initially, um, hesitated.

Luret Lar: 00:12:11

They, uh, voiced out, um, some fears about being competent implementers and researchers, but at the end of the programme, they were excellent.

Luret Lar: 00:12:21

Karsor, was that your experience in Liberia?

Karsor Kollie: 00:12:25

Certainly.

Karsor Kollie: 00:12:25

So, um, as a matter of fact, the research as a whole, especially the, um, qualitative research is new, has been new to Liberia until we had the Countdown project.

Karsor Kollie: 00:12:41

That's when even the researcher, not just the implementer, going down to the community, everyone has some some bit of interest in terms of what we were getting into.

Kim Ozano: 00:12:51

I wonder, can you tell us a story or a moment when you were working with, you know, someone from the government who was having that researcher role, connecting with the community in a way they haven't before?

Kim Ozano: 00:13:02

Just to give us a picture.

Luret Lar: 00:13:04

Thank you very much, Kim.

Luret Lar: 00:13:05

I can remember working with somebody at the federal level, an implementer, who was supposed to train implementers at the state level.

Luret Lar: 00:13:16

Now, initially, the implementer at the federal level was a bit skeptical, and was like, 'Um, I've not done this before.

Luret Lar: 00:13:24

It was some other people on my team that were doing this', but we encouraged each other.

Luret Lar: 00:13:30

We had, um, mocks of the presentations with the implementer.

Luret Lar: 00:13:35

The implementer felt very comfortable and confident and delivered excellently on the cascaded training.

Luret Lar: 00:13:42

Now he came back to me after the training and he said, 'Wow, it's really good to take a bottom up approach because we're used to taking it from the top'.

Luret Lar: 00:13:50

So that was really something that stuck with me, that with encouragement and with capacity building and strengthening, roles can switch, roles can change, and we can be dynamic in the NTD program implementation.

Laura Dean: 00:14:02

I think one of the things that maybe you and Karsor could both talk about a bit more, and Karsor, it'd be really interesting to hear from your perspective, one of the things that always struck me as we were doing the countdown work was that often implementers, particularly at the national or state level, they're in their office, they're thinking about policy and large scale delivery of programmes.

Laura Dean: 00:14:25

And so one of the things that we were able to do within Countdown was almost kind of remove some of those implementer, uh, co-researchers from their offices and go and work with them at community level to understand some of the issues on the ground and, and in reality.

Karsor Kollie: 00:14:42

Thank you so much, Laura, for that question, and that was not just basically for people at national level, but even for county level guys, we're also having similar problems.

Karsor Kollie: 00:14:56

During the dissemination is where we sort ourselves in terms of some of the challenges that are in the field and people who were from the community were explaining to us some of the challenges that they really, really face.

Karsor Kollie: 00:15:12

And we cannot be at the national level to clearly understand all of that without hearing from the horses own mouth.

Karsor Kollie: 00:15:20

Uh, in terms of those that affected directly, uh, during the implementation, and those are providing the delivery of the services at the community level.

Luret Lar: 00:15:30

From my own experience, going to the field with an implementer from the federal level to conduct a participatory method, using transect walks, was a very, very important and vital turning point for that implementer.

Luret Lar: 00:15:46

I can remember him saying we're used to the house to house distributions of medicines, but now going on the field and hearing from the voices of the communities, that other structures like shrines, petrol stations, other social, um, areas could be used for programme implementation to sensitise the community to distribute medicines.

Luret Lar: 00:16:12

So for that implementer, it went beyond house to house distributions to having fixed post distributions and other potential structures that sitting in the office would not have brought to the forefront.

Laura Dean: 00:16:26

What you're both saying is that in Countdown we focused a lot on challenges and solutions, and I think that was one of the unique things around the co-production approach and that it meant that solutions came from communities, they came from lower level programme implementers.

Laura Dean: 00:16:43

It wasn't only decisions that were made at a really high level without kind of engagement across the different levels of the health system.

Laura Dean: 00:16:51

And I think that was one of the things that felt unique about the processes that we went through, that sharing together, kind of, maybe helped programmes at the national level to think differently about the role that communities could play in the design and delivery of NTD programmes, but, but broader health services as well.

Kim Ozano: 00:17:11

Yeah, I think it's, it's really different to a lot of the programmes, and I think cause it is large scale as well, in that this was done across four countries and a real commitment to that bottom up approach, I was just looking at the supplement here in front of me, and you know, you've really documented very well the co-production approaches you took, Luret, I can see here that you wrote up the methods that you used, the transect walks that you've just spoke about as well.

Kim Ozano: 00:17:36

Um, Laura, how do you think the co-production approach really changed the outcomes of the research?

Kim Ozano: 00:17:42

I think in different ways.

Kim Ozano: 00:17:44

I think it was all centered largely around ownership and not just ownership at the national level, but at lower levels.

Kim Ozano: 00:17:51

I remember very early in Countdown, after we'd had one workshop in Liberia, Karsor and I had a conversation and he said, you know, this type of research is new to us.

Kim Ozano: 00:18:03

It's very rare people come to the NTD programme and they ask us what our challenges are and we work together to create solutions and I think why why Countdown worked, and why evolved through time, was because it focused on building trust and identifying problems at different levels.

Kim Ozano: 00:18:22

So the challenges communities were facing the challenges, health actors were facing and then the challenges that kind of policy and decision makers were facing, and we created kind of shared spaces to try and come up with solutions together.

Kim Ozano: 00:18:37

And I think being quite critical and reflective of different spaces of power that that co-production often creates or has to work within really helped us to, to work in different and new ways and be open and flexible to the issues that were emerging.

Kim Ozano: 00:18:55

Obviously, it wasn't without challenges.

Kim Ozano: 00:18:57

Um, and, and I think there's still things we could have done better and we could learn from for the future, but I think that's why the longevity of the program as well helped us to really build that trust and encourage policy and decision makers to see the value in these approaches rather than just kind of more traditional randomised control trials or, or other methods.

Kim Ozano: 00:19:21

It sounds like trust was almost a central principle that evolved throughout the programme.

Kim Ozano: 00:19:26

Karsor, in terms of building that trust, what is the legacy that Countdown's left and where is the ministry in terms of trust and relationships with the community as a result of that?

Karsor Kollie: 00:19:39

The trust, uh, on the community levels is enormous, and it has really contributed to sustainability to some extent.

Karsor Kollie: 00:19:49

Um, I can tell you that it was through the Countdown that we were able to find challenges that have helped us to shape the way we provide services, especially mass drug administration services.

Laura Dean: 00:20:05

What was also a strength and what was important in Countdown is that we allowed flexibility across the different settings to kind of shape solutions that were, were driven by the need within the setting and I think that that's something that comes out quite strongly in the special issue or special supplement, but it also meant we could draw generalisable lessons for when you're doing large scale implementation research, what principles should you be thinking about in terms of co production and creating new knowledge that is embedded within the systems where you're working.

Kim Ozano: 00:20:39

And one of the things that cuts across all of our episodes is terminology like co-production.

Kim Ozano: 00:20:45

It's great to see also that the lessons from both Nigeria and Liberia were brought together and shared in these papers around quality improvement approach and the different steps that were needed.

Kim Ozano: 00:20:55

So, uh, to our listeners, do check into the supplement because all of this is documented in there.

Kim Ozano: 00:21:01

For those that want to embark on something large scale, often we hear critiques that, you know, participatory action research is really hard to manage at that level or co-production at that large scale level.

Kim Ozano: 00:21:14

So what piece of advice would you give to those that are just embarking on that journey?

Kim Ozano: 00:21:18

Let's start with, uh, Karsor...

Karsor Kollie: 00:21:21

So the piece of advice we give to anybody getting into this journey is to be open, uh, try begin from the bottom, uh, before you go to the top, uh, do change in strategy as you go along.

Karsor Kollie: 00:21:40

Don't wait for the last finding before you can make changes, uh, because that really have to improve, uh, treatment coverage.

Karsor Kollie: 00:21:47

And that's what we have been doing all along.

Karsor Kollie: 00:21:50

Thank you.

Kim Ozano: 00:21:50

Thanks very much.

Kim Ozano: 00:21:52

So be open to starting at the bottom and also be ready to adapt, in real time by the sounds of it.

Kim Ozano: 00:21:58

That's great.

Kim Ozano: 00:21:59

Uh, Laura?

Laura Dean: 00:22:01

Yeah, I don't think we've talked very much about this today, but I think one of the other things we learned was around inclusivity and participatory approaches.

Laura Dean: 00:22:09

Not all participatory approaches, not all co-production is inclusive.

Laura Dean: 00:22:14

And so I think being really thoughtful at the beginning of a big programme about how do we include people that have different learning needs, different physical needs?

Laura Dean: 00:22:25

How do we create inclusive spaces?

Laura Dean: 00:22:27

And, and kind of almost doing a power analysis at the beginning of a big activity like this can really support to make sure that you are inclusive as you move forward, and it's not just the same voices all of the time.

Kim Ozano: 00:22:39

So a real focus on power and inclusion and examining those quite critically to make sure that people aren't left behind in the process.

Kim Ozano: 00:22:46

I think that's a great piece of advice.

Kim Ozano: 00:22:48

Luret, please...

Luret Lar: 00:22:50

For me, I think it's best to do a needs assessment before the main study and a bottom up approach should be taken in this.

Luret Lar: 00:22:57

Build and strengthen capacity very early in the programme, because once you're gone, those legacies remain.

Luret Lar: 00:23:04

And lastly, let's consider some circumstances that might be beyond our control.

Luret Lar: 00:23:10

For example, we experienced the pandemic, but it didn't stop us.

Luret Lar: 00:23:14

We scaled down our research, but we met our research objectives.

Luret Lar: 00:23:18

So it's good to be open and keep going.

Luret Lar: 00:23:20

Thank you.

Kim Ozano: 00:23:21

Wonderful.

Kim Ozano: 00:23:22

Be resilient and responsive there, I think is quite important.

Kim Ozano: 00:23:25

So thank you very much to our guests for joining us on today's podcast.

Kim Ozano: 00:23:28

To our listeners, do like, rate, share, and subscribe.

Kim Ozano: 00:23:31

And we look forward to connecting with you next time.