The LRI may initiate own research projects which results will inform our procedures.

LRI Stakeholders’ consultation on leprosy research priorities

In 2018, the LRI conducted a wide stakeholders’ consultation to evaluate its research priorities. A mixed method approach was used to identify and rank research priorities involving a wide range of stakeholders including researchers, NGO staff, policy makers and persons affected by leprosy.

The results informed the formulation of the revised LRI research priorities.

Reviewing research priorities of the leprosy research initiative (LRI): a stakeholder’s consultation. Khazai Z, van Brakel WH, Essink D, et al. Leprosy review. 2019; 90 (1) : 3-30. 

LRI Participant Engagement project

One of the findings of the stakeholders’ consultation was the stakeholders advocated for enhancing the participation of persons affected by leprosy; in research, and in service delivery, and in particular researching models for enhancing participation and exploring the effect of such participation.

This resulted in a new LRI initiated research project with the aim to identify how and when persons affected by leprosy may be effectively engaged during the research process from conception to implementation and dissemination. While there is a quite extensive body of literature on patient engagement or patient oriented research in developed countries – much less is known about this topic with respect to neglected tropical diseases in general and leprosy specifically. 

From February to July 2020 an MSc student (Laura de Groot) undertook  this project aiming to explore the interpretation, barriers and opportunities of meaningful engagement of persons affected by leprosy in research. This exploratory study emphasised the importance of engagement of experts-by-experience in leprosy research and identified ways forward that include, but are not limited to, the acknowledgement of its value and creating a shared understanding.

Meaningful Engagement of Persons Affected by Leprosy in Research: An Exploration of Its Interpretation, Barriers, and Opportunities. de Groot L, van ‘t Noordende AT, Duck M, et al. Tropical Medicine and Infectious Disease. MDPI AG. 2023; 8 (1) : 52.

LRI Research impact assessment

In the past 10 years, LRI has (partly) funded over 80 research projects in more than 20 countries. The project teams provide biannual progress reports during their funding period and include some information on specific research outputs such as publications and presentations. As part of LRI’s third mission “facilitating translation of research results into policy and practice”, we would like to better understand the wider outcomes and impact of the LRI-funded research projects, such as uptake of research findings and related changes.

From February to July 2023, an MSc student (Margot Spelde) undertook this project with the aim of identifying the wider impact of completed LRI-funded projects, as well as identifying the barriers and facilitators for generating impacts experienced by project leaders

The results informed the LRI about current gaps and provided important insights regarding areas for improvement and recommendations for the future.