Welcome to the initiative that is putting the targets on our maps
How we can target the latest innovations to the places where they can have the most impact
There is a lot of leprosy data out there, but it is far from well organised. As new tools become available to the leprosy sector – field-friendly diagnostics, prophylactic regimens, and possibly a vaccine – we need data that will tell us where these interventions will have the most impact. At the moment we have maps but no targets – in some places we don’t even have maps.
Beyond that, as we make a dent on leprosy transmission and cases become fewer, it will become harder to know where to find the remaining cases. Good data and good mapping of that data will be the answer to finding the needles in the haystack.
To address this, the Global Leprosy Mapping Initiative has been set up to connect government ministries and leprosy control teams with the latest advancements in the emerging world of readily available mapping tools. This Initiative is putting targets on our maps so we know where we should be and so we can make better decisions about what should be done.
The Initiative is being administered by ILEP with funding provided from ALM, The Leprosy Mission, SLC, NLR, the ILEP project reserve, Effect Hope and Lepra. In this article we unpick where we are with leprosy data and how this initiative can help us to have the best directed leprosy programmes ever.
The problems with existing leprosy data can be broken down into three main issues: a lack of detail, a lack of consistency, and systems that are failing us.
A lack of detailAcross many countries, the data we are receiving is missing important details about patients that would allow us to do crucial disaggregation. This includes where patients live, their age, gender, sex, PB/MB status, PEP status, disability grading, and more.
At the moment, many front line workers are not trained to collect this data, some do not understand why it is important to collect or how it is used, and even if this data is collected, we are not doing enough with it to encourage front line workers to continue collecting data in such detail.
A lack of consistency Every leprosy endemic country has leprosy data, but each country collects and manages this differently. At the local level this may be collected in paper-based systems which is then translated into Excel at the district level before entering one of the Health Management Information Systems (HMIS) at the regional or national level. This is one approach that might take place in one part of the country, but it could be different in another part of the country. It will almost certainly be different in a different country.
This inconsistency means that cases can easily be missed or reported twice, as data is submitted to systems manually. This approach also means that we are not collecting all the data that we need as healthcare workers collect different indicators.
Systems facing big challengesBoth of the above challenges contribute to systems that do not allow us to make the most of the leprosy data we have. But there are other challenges. In many cases, leprosy control programmes have a lack of clarity about what they should do with the data they have.
In other instances, leprosy and NTD teams lack the skills to use mapping software. This skillset might rest elsewhere in the Ministry of Health, but the leprosy/NTD team either do not know they can access it or face long delays in accessing it. There are also a number of countries that have had recent re-districting, which is making it hard to compare historical data.
The Initiative has started by creating two tools that will guide leprosy control teams as they seek to collect and interpret data: the data infrastructure ladder and the Leprosy Information System Assessment Form.
Data Infrastructure Ladder
The goal of this tool is to understand what data is being collected and how it is managed so countries can set goals for improvement. The tool describes the minimal, moderate, and advanced indicators or dataset needs for leprosy HMIS and mapping across 5 domains: clinical patient data, demographic patient data, population data, health facility data and spatial data. The tool has a ladder which shows the progression from basic data management and data analysis and can help establish goals of progression for leprosy control teams. The tool should help us to see the gaps and inconsistencies in our information systems so that we can go about creating better systems.
Leprosy Information System Assessment Form
This form intends to collect baseline data on how leprosy patient data are recorded, reported, processed, and managed in a government national leprosy programme. This tool assesses the type of data system used for leprosy data and whether it is case based or aggregated and at what level of the health system. The assessment asks about data flow, mapping, and the level at which various indicators are collected. As countries complete this form, the team behind the Initiative will begin to get a clearer idea of the current state of play in leprosy data collection and analysis so that they can create guidance for better systems.
Now that these two tools are available, the Initiative has worked with three countries (Bolivia, Nepal and Senegal) to take on intensive mapping processes. This has meant that teams within these countries have been working on getting clearer and more consistent data, they have received training on how to use mapping software, and they have begun the process of carefully mapping leprosy within their countries.
The plan is for these countries to publish their findings, not only in terms of the data they get, but also on the process they have followed. They will provide case studies and examples for other countries to follow. They will share their challenges and their solutions so that we will have, for the first time, blueprints to follow for systematically mapping leprosy across a country.
This takes us to the plans that the Initiative has for the future. As they get a clearer picture of the current situation and the means of addressing the challenges we face, they will push harder and harder to share their knowledge and train teams worldwide.
They will share their findings through ILEP and InfoLep, they will arrange for online training and a process of regional training of trainers. They will produce online training modules for Ministry teams to follow. The hope is that, in the years to come, all country teams will feel equipped to collect appropriate data and interpret it well. We will have the clearest ever picture of where leprosy is and where we should direct our services.
This work comes at a crucial moment. Not only do we have readily available mapping software available for the first time, the WHO has also released the Leprosy Elimination Monitoring Tool. The team from the Mapping Initiative is starting to work with WHO, so that their efforts can align. The intention is for leprosy control teams to have clarity and the skills they need to use the mapping and data they need for the WHO tool.
Mapping is a complex process and it can be hard to explain the need for it if there is not a tangible outcome. Now that we have PEP, mapping has become an obvious next step and it is easy to persuade people of the importance. Happily, this has coincided with the increased availability of mapping tools.
In the years to come, as more Ministry teams get to grips with mapping and data, we will get a clearer sense of how to implement PEP, diagnostics, and maybe even a vaccine.
But the impact extends beyond that. Our advocacy and fundraising teams will be able to make convincing, data-driven cases for investment from governments and funders. Our interventions will be better directed and easy to cost.
Mapping and data has long been overlooked in our under-resourced sector. Now though, this Mapping Initiative is allowing us to catch up. This new understanding of leprosy data is giving us a map of the route we must run on the last leg of the race to end leprosy.
Article written in collaboration with Melissa Edmiston, Vice President of Programs at American Leprosy Missions.
Cover photo and final photo credit: Ricardo Franco