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 and were published in the Leprosy Review.

Reviewing Research Priorities of the Leprosy Research Initiative: a stakeholder’s consultation. Leprosy Review (2019) 90, 3-30

Zahra Khazai, Wim van Brakel, Dirk Essink, Tom Gillis, Christa Kasang, Pim Kuipers, Paul Saunderson, David Scollard, Nienke Veldhuijzen

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. Lessons may be learned from the HIV field – that has developed tools for patient and community engagement.

From February to July 2020 an MSc student (Laura de Groot) will work on this project and the outcomes will inform engagement guidelines for the LRI.