How do we shift the dial on some of leprosy’s biggest and most stubborn problems?
An interview with TLM's Global Lead on Innovation and Learning
To achieve a world without leprosy, there are seemingly intractable problems that we must seek to overcome: how do we achieve zero transmission of leprosy? How do we provide adequate disability services for people with complex needs or in remote areas? How do we overcome a lack of funding to produce new treatments for ENL?
These are just a handful of these questions and they become complex when you start to apply them to specific contexts and you introduce new challenges from the external environment.
Moving on big questions like this would help us to shift the dial on our path towards zero leprosy. Together they have no one answer, but each would benefit from a culture of learning and innovation.
Last year we spoke to Dr Arie de Kruijff, TLM’s first Global Lead on Innovation, to hear about his plans for innovation. In this follow-up, we talk about how we create cultures and systems that allow us to shift the dial on the biggest challenges in leprosy, those that have been so hard to make progress on.
Timothy Burton from The Leprosy Mission International: Remind us, Arie, what is innovation?
Arie de Kruijff: Simply put, innovation is new ideas that it is possible to implement and that would add value.
TB: Why is innovation something that requires us to have a proactive approach?
AdK: There are heaps of new ideas that come from all kinds of places: the leprosy sector, NTD organisations, the development profession. We need a proactive approach to innovation because all too often, no one picks up the good idea and runs with it; the ball gets left behind.
We need to get better at identifying the good ideas and then evolving them into something that could be implemented. Post-Exposure Prophylaxis (PEP) is a great example of this. The research was first conducted in the early 2000s through TLM’s Bangladesh team. The findings from this innovative research were promising, but for a few years, the ball got left behind because nobody picked it up and ran with it. After a few years, NLR dug into this research and decided it was something they could run with. Now we are at a stage where PEP is one of our most powerful tools for interrupting the transmission of leprosy; for the first time, we can prevent this disease.
We need to be able to replicate this process of innovation and implementation for all good ideas. To do that we need a culture of innovation and systems that allow good ideas to thrive.
Photo credit: Sabrina Dangol
TB: How do we create a culture of innovation where good ideas thrive?
AdK: I think that requires three things: strong collaboration, a culture of learning and agility, and an ecosystem that allows you to scale and sustain innovation. All of these things are interrelated and if we get each of them right, we will create an atmosphere in which the best ideas can be allowed to grow and move us towards solutions to our biggest challenges.
TB: Let’s start with the idea of strong collaboration. How do we do that well and how will it make a difference?
AdK: Collaboration means having a shared goal and a sharing of methodology and resources. I talked about how sometimes we have a good idea and no one runs with it; this is why you need collaboration. Your collaborators are the teammates who help to pick up the ball after your good work and together you can turn it into something that makes a difference. Perhaps your collaborators have a particular area of knowledge or experience that is crucial to getting a good idea off the ground, perhaps they have the resources to invest into testing whether an idea is implementable, perhaps they have trust in a community that will help you to test and refine your idea in an implementation context.
For us at The Leprosy Mission, I see this happening in two ways. First, we can collaborate better amongst ourselves; if one country has started to tackle the issue of implementing PEP, they will have learnt a lot. We need to share what they have learnt so that when the next country starts to tackle PEP, they will be starting from a better place.
The second way this can happen is within a country. We could take Ethiopia as an example. The leprosy control team in Ethiopia saw that people were being registered as new cases at the leprosy specialist clinics – this was a problem because patients had often travelled some distance to access this care and so our mapping showed hotspots at the clinic, rather than within the communities where people were living and where transmission was happening.
The team knew they needed to revamp their data and mapping, but they didn’t know how. They started to formulate a plan for this without realising that their own Ministry of Health had great technical expertise and had just been through a similar exercise with other diseases. Collaboration became the key to unlock that particular door.
Creating opportunities to collaborate requires us to communicate better but also to create moments for collaboration. That might be forums – within The Leprosy Mission or at country level – where good ideas can be shared and out of which we will have people who can pick up an idea and run with it. Someone may mention a good idea within a meeting and everyone in the meeting acknowledges that it is a good idea, but no one takes responsibility for pursuing it. This is the kind of thing we need to get better at.
To make that easier, we need to make good ideas more visible. One of the things I am looking at is creating a dashboard for good ideas. If a good idea comes up in a meeting or through a team’s work, it would be added to the dashboard and it would go through a process of grading by asking the kinds of questions that are essential to innovation: is it new? Is it scalable? Is it something we could implement? What value would it add?
My vision is that we will have a dashboard on which we can all see the good ideas that have come out of the incredible depth of knowledge we have in The Leprosy Mission, but not only that, the grading will allow us to see which ideas have the most potential; what could work and really have impact. By making new ideas visible in this way, we allow for collaboration. Another team elsewhere in the organisation may have had experience of a similar topic that unlocks an idea and makes it practical. Or perhaps someone working on institutional funding sees an idea on the board and connects it with a funding opportunity they have seen recently.
To make collaboration work, we need to make our best ideas more visible and create more opportunities to discuss ideas that have potential.
TB: Okay, so what about a culture of learning? What does that mean?
AdK: Like collaboration, this also has two levels. First, you have to start asking the right questions. Second, you need to get buy-in from the people with whom you are working.
So, let’s start with asking the right questions. A lot of our projects have specific goals that are achievable within the project’s lifespan. Once you have funding, you get your head down and try to deliver on what you have committed to doing. That is good, but it could be better.
It would be better if we were ready to learn and adapt as our projects progressed. Start asking difficult questions: did we make assumptions in the design of this project that have proved to be wrong? Have there been changes in the community we are working in that mean we need to change our approach? Is this actually going better than we expected and we need to find out why? This is how we make our work agile.
In effect, this means monitoring and evaluation on an ongoing basis, rather than just periodically or at the end of a project. It is difficult to do because it requires a time commitment to visit communities and listen to what is and isn’t working and then to take more time to evaluate your data, share it with others, and find opportunities to improve.
These aren’t easy things to do, so we have to start at our project-writing phase. Our projects are written with the assumption that they will be implemented in predictable environments with predictable outcomes, but our project environments are so rarely predictable. You may have a three-step plan for implementing your project, but that doesn’t take into account that your assumptions about what will change might be wrong. Should you power through even though you are not having the desired change?
This is where our second step comes in: getting buy-in from the people with whom you are working. If our projects are written with the recognition that we may need to change course part way through, we can establish this from the outset with the communities we work in, with the funders who are making the project possible, and with the partners that are supporting our implementation. We can budget for ongoing monitoring, evaluation, and learning. All parties then go into projects aware that we may need to innovate along the way.
If we have this learning approach to our programmes, we will create opportunities to achieve beyond the initial goals of the project. We will learn and grow within projects so that the projects which come after are equipped with better assumptions and more knowledge about how to create long-term change, rather than only achieving change within three-year project cycles.
Which brings us on to the idea of creating an ecosystem that allows you to scale and sustain innovation.
TB: Can you tell us what the ecosystem looks like and how it can foster the long-term changes we need?
AdK: This starts with identifying those bigger picture issues, those challenges that will not be solved with a three-year project but will require long-term, deliberate action. Maybe this is PEP, or improving data systems, or improving disability management within a country.
Once you have identified the big picture goals that you are aiming at, you need to bring your partners around it. That might be the Ministry of Health, the National Leprosy Control Team, your partners in ILEP, community and OPL leaders, or other development actors and funders. Together you agree that this is a goal that is worthwhile and then agree a process for moving forward. This might mean establishing a few milestones for your work and then agreeing on indicators to help you see if the dial is starting to shift. Together you might identify who else needs to be around the table in order to make a shift.
This is the fundamentals of your ecosystem. From here, change will come through a combination of bigger and smaller projects that all point in the direction of your ultimate goal. These projects will allow you to take innovations and apply them to your context. You and your partners will work on these together and along the way you will be collecting evidence bases, moving through your milestones, and accessing funding through your diverse network of funders.
At the start of the process you probably will not be clear on what all of the steps look like. You will ask the kinds of questions that I spoke about earlier, allowing you to be agile within projects but also allowing you to be agile within the bigger-picture process. You should be prepared to change course if your evidence bases show you that you need to be doing something else if you want to achieve your long-term end goal.
At the moment, we are not often working like this at The Leprosy Mission, but I think we will start to move in that direction as we start to focus our attention on the long-term challenges that are facing persons affected by leprosy and our efforts to achieve our three zeroes: transmission, disability, and discrimination. It might mean a 10-15 year ordeal, but it will be worth it.
TB: You mentioned that all of these elements connect and relate to each other. Could you explain how?
AdK: It is clear to see how collaboration plays a role throughout. It allows us to take good ideas and move them forward together. By getting our partners on board in our adaptive project approach, it allows us to create space for us to be agile and learn from what is happening. And collaboration is fundamental to creating the coalitions we need to achieve long-term, big picture change.
You’ve also seen how a culture of learning allows us to move on the big-picture challenges; by asking the right questions, we can move towards the long-term answers that elude us when we are limited to a short-term approach. Learning also allows us to take a good idea and probe it, test it until we see if it works and if it could be implemented. Asking the right questions of a good idea will make it or break it, showing us which ideas are worth pursuing.
Our ecosystems for scaling and sustaining also allow us to move ideas forward. Some good ideas need us to test and evaluate and to do that, sometimes you need to build an incubator around an idea. This means a group of invested parties with relevant skills, knowledge, and networks will pull together around an idea, weight it, test it, and move it forwards. The ecosystems we build are the perfect place to create incubators, where good ideas are tested in the pursuit of finding solutions to big problems.
This is what innovation will mean for us at The Leprosy Mission. We will make good ideas visible. We will create opportunities for good ideas to be picked up and run with. We will foster the connections that allow good ideas to benefit from new perspectives, fresh impetus, and diverse funding. We will test, question, and move to meet what the evidence is showing us. We will maintain a long-term perspective on the biggest issues and monitor whether we are shifting the dial.
Throughout all of this process, we need to think about the end users. All of the innovations we are working on will ultimately affect the lives of persons affected by leprosy.
For example, if we have a new innovation that has been tested in one country and we want to try to apply it to another country, we should start that process by speaking to persons affected by leprosy. Find out if the innovation you are considering is going to solve a problem that they are struggling with. Ask questions to learn whether the community shares your assumptions about a project. Find out from a community what consequences they might expect from your intervention – both good and bad.
TB: With all of this in mind, what will 2025 look like for you, as you lead on all of this within The Leprosy Mission?
AdK: We are launching our new Global Strategy next year and part of that strategy is the creation of four groups which are tasked with pursuing four key breakthroughs around the areas of transmission, disability, discrimination, and fundraising. My hope is that these groups will be places where innovative ideas can be picked up and run with. I will work with these four groups to create systems that will enable this.
I mentioned earlier the possibility of a dashboard that will allow good ideas to have visibility. I will work on developing that dashboard and for creating a system via which we can rank ideas according to their viability and potential impact.
I also hope to build the capacity for innovation within our teams through developing innovation toolkits that allow us to work with more agility and help us to break down any silos we might be operating in.
I also hope that we’ll have a few pilots of innovative ideas that we can work on and that we might be able to strengthen the evidence bases through which we can make decisions and of which we can ask questions.
There’s a lot to do, but the promise of what could happen if we get this right is huge.
