What does it mean to engage persons affected by leprosy in scientific research?
We ask our four national research leads what this means in their work.
We have made an effort to have persons affected by leprosy in the room when we are generating ideas for research projects. We have also invited a person affected by leprosy to join our Research Ethics Committee. Across our work, we have tried to find ways for persons affected by leprosy to play a role. They might work on the project development, the surveys, the data collection, or interpreting the data - particularly qualitative data. They can help us to understand behaviour and thought processes and they have a big role in dissemination – when they speak publicly about leprosy, their words have greater impact.
We have presented projects to IDEA Nepal, a major Organisation of Persons Affected by Leprosy in Nepal. We have done this at the design stage of projects and as the project has progressed and sought feedback on our work. On one major project – RIGHT – we consulted with IDEA Nepal every six months and they helped us significantly with the enrolment of patients.
We usually start by engaging persons affected by leprosy from the design stage of projects. We do this through IDEA Nigeria, a major Organisation of Persons Affected by Leprosy in Nigeria, and as a consequence, they are included in all of our proposal submissions and a representative from IDEA is a part of the research team. Sometimes the idea for a research project will come from discussions with persons affected by leprosy. IDEA have also helped us to organise, coordinate, and mobilise research participants, ensuring that participants are well informed and motivated to contribute to the research project.
A lot of our research work relates to PEP and active case finding, which means that we need to screen large numbers of people. Persons affected by leprosy are excellent at helping us to identify where we should focus these efforts and encouraging people to come forward for screening. They have also helped with basic documentation, like collecting names and other personal details. Without their support and encouragement for patients, it would be hard for us to enrol enough people to our research projects.
Most of the leprosy patients are from lower socio-economic conditions and their educational level is not that high (they usually left school early). They have some basic knowledge around writing and documentation. That places a limit of the ways that they can support our work. But we should still seek out opportunities.
Dr Rishad Choudhury Robin, Bangladesh
We’ve seen that sometimes it is hard to reach a community, whether that’s because of Covid or because of something like the flooding that happened in Nepal in 2024. For example, during Covid we had to scale back the number of planned community engagement sessions to something that was more realistic.
Dr Indra Napit, Nepal
Research is a very technical thing and we do not expect people affected by leprosy to be involved in every aspect of it, except if that person is already engaged in research or has a research interest.
Dr Paul Tsaku, Nigeria
When you talk of people with lived experience in the west, the engagement would be better, they would understand what research means, the words wouldn’t be so difficult to understand. If in India we only ask doctors, medical students, or engineers affected by leprosy to be a part of our work, is that really representative of communities? We need to develop a position paper that outlines the eligibility criteria for persons affected by leprosy to engage in research and it should include things like IT skills and communications skills.
Dr Joydeepa Darlong, India
