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The Cutting Edge of Community Research

17 February 2023

Throughout our 100 year history, Lepra have been at the forefront of research into new and innovative approaches to the detection, treatment and support for people affected by leprosy. 

As an NGO dedicated to neglected tropical diseases (NTDs), Lepra is proud to be part of a family of specialist partner NGOs, dedicated to providing holistic care for some of the world’s most vulnerable communities. Under the banner of the International Federation of Anti-Leprosy Associations (ILEP), Lepra and partner NGOs are bringing together expertise in research and person-centred care to simultaneously enhance services and create evidence on what works best in community care.

Current research methods and programme design, places great importance on the consultation and full involvement of people within the community, local government, and healthcare providers throughout the whole process. It is recognised that this approach is not only an important ethical consideration, but also leads to the development of programmes and practices which are more sustainable in the long-term.  

In this spirit, Lepra and our partners at Canadian charity Effect Hope and German charity GLRA (German Leprosy & TB Relief Association) are embarking on a new research project in 2023 called UPLIFT – ‘Unlocking the Potential of Leprosy & NTD affected people, to pursue Inclusive, Fulfilling and Transformational lives, through a harmonized Community Based Group model’.

Over a three-year period, the partnership aims to undertake a detailed study of the function of community-based organisations, focusing on India, Bangladesh and Ethiopia. Together we will try to identify what kind of community-based groups prosper the most, and help the existing and new groups in India, Bangladesh and Ethiopia area develop in that way. 

The impact will be measured before and after these changes take place, in terms of the group’s members physical health and also social, financial and psychological well-being. 

With 1-in-2 people affected by neglected tropical diseases experiencing moderate to severe anxiety or depression, UPLIFT will introduce peer counselling to half of the community-based organisations, chosen at random. This will give our mental health intervention a scientific base when measuring its added impact on health-seeking behaviour and, downstream, on physical and psycho-social outcomes.

The overall aim of the study is to develop a best-practice model for community-based groups and self-care in the widest sense.  Once formed on best-practice principles, they can be adapted to different contexts, and implemented in any community affected by neglected tropical diseases, anywhere. 

This will ultimately give hope for an engaged, self-sufficient community with a lasting impact on the burden of neglected tropical diseases. 

Lepra and our partner NGOs, with our 300 years of combined experience in leprosy care, are best placed to develop such grass root interventions and report on it’s impact to the world.