What does innovation in leprosy look like and how do we make it a reality?
An interview with Dr Arie de Kruiff, TLM's new Global Lead on Innovation and Learning
Earlier this year, The Leprosy Mission hired its first Innovation and Learning Lead, Dr Arie de Kruijff. Arie has been serving with The Leprosy Mission in various roles for around two decades and now turns his attention to the challenge of defining and driving innovation.
In this interview, we talk to Arie about what innovation looks like in practice for the leprosy sector and how this attitude and way of working could be central to the sector overcoming the hurdles that are standing between us and a world without leprosy.
Dr Arie de Kruijff: The challenges of defeating leprosy are still huge.
How exactly we overcome the challenges of defeating leprosy is still unclear. We will need to innovate and learn from our progress - or lack of progress - to find the right path forward. The Leprosy Mission certainly has a big role to play in that: we are the largest of the leprosy organisations and we have an extensive network of teams with in-depth leprosy knowledge and a calling to make a difference.
Having a role like this in the organisation provides us with an opportunity to find new solutions and test those in quicker cycles of learning. We are in a position to do this because we are a hands-on, grassroots organisation; we can be innovators in the field and put things into action.
AdK: Broadly speaking, innovation is any new tool or method to improve efficiency or effectiveness. Things that add value – new ideas and concepts.
The leprosy burden is bigger than we are able to cover in TLM and government health systems are not covering as much as they need to. In many countries, the leprosy service structure, such as supervision, gathering data, and the system itself, have not moved with the times. There are ways to renew and improve practices.
People are falling through the cracks and we need to reach beyond ourselves and work with others to renew these systems and structures.
For me, there are two types of innovation that can help us with this.
Firstly, you take the status quo and you learn from it so as to improve it. That is what we call incremental innovation. You have to be deliberate about slowly improving performance.
Secondly, there are things that we didn’t have before and they come in and bring profound change. This is a breakthrough innovation.
In the leprosy world, we need a bit of both. To enable this, we need a culture of learning; finding ways to improve existing systems, measuring the changes we make. We also need to invest in the kind of research that brings about breakthrough innovations.
All of this needs to be grounded in a culture of innovation, where we seek to improve and challenge ourselves. Then, when breakthroughs come, we have the right ground on which to implement.
AdK: This will no doubt differ, depending on the country you are considering. Some countries have a real need for health systems strengthening. There are big gaps in terms of coverage and service delivery. In those contexts, we can add a lot of value by collecting data and mapping coverage areas, including disability and diagnostic services.
The Leprosy Mapping Initiative is another good example of how mapping will make a difference. In many of the countries we work in, health departments only report the cases they have found, which is far from the full story. The burden of leprosy is much greater than what we are seeing – we only see what we find. This paralyses us in a way; if we don’t see the problem, we don’t know how to fully overcome it. We need to know the real need of leprosy.
As governments come to understand the scale of the problem and as we provide them with solutions that are based within their existing structures and ways of working, we might start to change the culture. But it could be a few years before we start to see those changes.
We need to look at how we integrate leprosy services into the services that governments are already providing. How can we provide these services through primary healthcare workers in a way that is practical for those workers? We have to make life simpler for these overburdened government healthcare workers by adding value without adding burden. To do this, a field we need to engage with and where we could make a great difference is in the development of learning systems for this context.
Photo credit: Sabrina Dangol
Lastly, we need to work on grounding our breakthrough innovations. If we have new diagnostic tests or enhanced PEP regimens, we have to work on how to implement those innovations. Research has to be translated into practice.
Through all of these things, we will need cycles of iterative testing, to find the right approach and verify our methods.
AdK: Undoubtedly, investment is the greatest challenge. Resources – of time, money, and interest – are limited. We need to make the most of each of these.
The famous saying tells us that ‘need is the father of innovation’ and there’s a lot of truth to that. Getting buy-in from governments, partners, our own teams, and persons affected by leprosy requires us to demonstrate where the need is greatest. We also need to show that what we are doing to address that need works and how we can improve.
Advocacy is crucial to all of this. It was a recurring question at the NNN Conference; how can we get local government health departments to be accountable and take action?
We can do all the mapping we want, but if we don’t share that with governments convincingly, by providing solutions and partnerships that add value, we will not get where we need to be.
We are also going to have to work on alignment. What are our priorities? What is important to us in our effort to defeat leprosy? Once we have defined this, we need to align our funding, advocacy, and research to those priorities.
Perhaps that will mean looking at a longer-term roadmap of what the fight to defeat leprosy will look like over the next 10, 15, or 20 years. We will need to know what milestones to aim for now in order to make a difference in 10 years’ time.
For example, if we saw a diagnostic test that shows promise, we have to know what we need to do in order to fully implement it. Do we have equipment and supply lines? Have we tested to see how practitioners and communities respond to it? Roadmaps identify priorities and their milestones so that we can seek specific funding for that.
AdK: There’s a few things that I am considering at the moment. The first priority is to see how we are defining and measuring success. How do we engage with our data? Defining what we need to achieve and being able to measure the difference are essential for progress.
Beyond that, I am looking at ways to bring the vast networks of expertise and field experience within the TLM Fellowship to bear on specific elements of the zero-leprosy journey. This means communities where people with expertise in a particular area – disability management, diagnostic tests, laboratory work – come together to share knowledge and actively participate in practice-based innovation and iterative learning.
I am also considering how we might fund innovation. As an example, ALM have an NTD Innovation Fund that has a call each year for innovative projects. That process has not only funded innovation, but linked ALM with wider networks of innovators, such as research institutions and businesses that drive innovations. ALM are better equipped as innovators because of these networks.
In whatever format we might fund innovation, the ideas and solutions need to come from the ground, from people who are seeing the problems each day. These people need to be given space to test and learn, which is something that should be included within project budgets. Encouragingly, some bigger donors are open to that kind of testing with their funding.
We will need to be focused, because resources are not unlimited. But I am very optimistic as I find my feet in this role. There are many capable people with a passion for leprosy and those affected by the disease. With the right direction and focus, I have no doubt we will find the innovations that will unlock the door to a leprosy-free world.
