Preserving Leprosy Expertise: How The Leprosy Mission is building a new generation of leprosy experts
For more than two decades, experts in leprosy have recognised a troubling trend: the decline in expertise due to the retirement or death of highly skilled and experienced leprologists. This poses a significant challenge to preserving critical knowledge about all aspects of the disease. As a result, several leprosy initiatives emerged as a collaborative effort to build and maintain leprosy knowledge and skills among various organisations, including the International Federation of anti-Leprosy Associations (ILEP), the World Health Organization (WHO) and the Global Partnership for Zero Leprosy (GPZL).
In this interview with Jannine Ebenso, TLM’s Head of Knowledge Management & Learning, we delve deeper into what it has meant for The Leprosy Mission to invest in leprosy expertise, the challenges we have faced, and what the future looks like for knowledge about leprosy.
Mafe Gomez from The Leprosy Mission International’s communications team: Could you provide further context on these initiatives? What is its core focus?Jannine Ebenso: When discussing the leprosy expertise initiatives, it's crucial to note that it's not a singular endeavour but a multifaceted problem addressed by numerous organisations.
Within The Leprosy Mission, discussions about the rapid reduction in leprosy expertise began about three years ago between me and Siân Arulanantham (Head of Programmes & Research, TLM Great Britain). We realised that we needed to put resources into it, so we hired an intern to research what training and learning activities, tools and resources are available across The Leprosy Mission globally. At the same time, we gathered together a group of practitioners from across TLM to discuss and develop a framework of essential knowledge and skills for people working with The Leprosy Mission. This laid the groundwork for creating what is now known as TLM’s "Leprosy Competency Framework," which defines the leprosy-related knowledge and skills required across all roles within TLM globally.
© Fabeha Monir
MG: Why was this initiative deemed necessary?
JE: The primary objective is to reverse the declining leprosy expertise, which has been diminishing as seasoned professionals exit the field. We must replace this knowledge and these skills if we want TLM to be an effective partner in the fight to defeat leprosy. So, it is essential for us to broaden our knowledge base – not only for the purely clinical aspects of leprosy, but the public health aspects, the disability aspects and the social aspects. Even office-based staff need some foundational knowledge about leprosy if they are to represent The Leprosy Mission in any way, or to answer questions from their families, friends or other people they meet.
That’s why our Leprosy Competency Framework has four competency levels, catering to both office and field staff, ranging from foundational knowledge to advanced expertise.
Foundation: Foundation: core leprosy-related knowledge, skills and attitudes that everyone should have.
Basic: Targets individuals in the field equipped to identify and refer potential leprosy cases appropriately. This is usually for community-based staff who are not authorised to diagnose leprosy or manage complications independently.
Intermediate: This level is for people with regular interaction with people affected by leprosy, who work independently. They need a higher level of competence in leprosy. Programme staff such as doctors, nurses, physiotherapists, community health workers, prosthetists and orthotists are some of the people who fall in this category.
Advanced/Specialist: Equips individuals with the expertise to educate and mentor others on leprosy-related matters. These are roles that regularly must deal with the complications of leprosy – they might include the types of people listed in intermediate level, but they are operating at a specialist level. They have received advanced training – commonly a post-graduate qualification (e.g. surgery)
The Leprosy Competency Framework is a strategic tool for planning individual and team learning and development initiatives. Moreover, it integrates seamlessly into our performance management systems. It facilitates a comprehensive assessment of role-based competency levels and identifies areas for growth and enhancement for all staff within TLM.
MG: Who has been involved in this initiative?
JE: At the beginning, it was me, Siân and Margaret (intern), then we formed the Leprosy Expertise Task Group - involving colleagues from TLM programmes across Asia and Africa – all of whom have been involved in training and learning initiatives. Bangladesh (Dr Benjamin Jewell Rozario – Senior Medical Advisor), Nepal (Geeta Gyawali – Human Resources Manager), India (Dr Joydeepa Darlong - Head of Knowledge Management and Babu Govindan – Physiotherapist and Trainer) and Nigeria (Dr Sunday Udo – National Director and Orowo Stephen – Head of Human Resources) have been involved since the beginning.
When Margaret moved on, Joy Fleming (Deputy Head of Programmes, TLMGB) joined the group as did Dr Arie de Kruijff (Global Lead – Innovation and Improvement). So we have a diverse spectrum of stakeholders, each contributing significantly to the development and implementation of the framework.
Throughout the process we have been sure to engage our leprosy experts, our programmes experts, and our experts in staff development.
MG: Are there any future challenges you anticipate?
JE: Looking ahead, staff turnover remains a concern. Sometimes, after completing assessments, employees leave the organisation before capacity-building measures are implemented. Consequently, we find ourselves restarting the assessment process with new hires or newly created roles. This presents a considerable challenge for HR in finding solutions to mitigate turnover impacts.
Additionally, effective communication poses another hurdle. It's crucial to convey messages in a manner that encourages staff participation without making staff anxious. We're mindful of our staff's diverse roles and responsibilities and so we don’t want to add to perceived burdens. Hence, we're exploring renaming our group (Leprosy Expertise Task Group to Learning Working Group)- to make it less intimidating, emphasising the importance of a culture of continuous learning and growth.
However, we must establish clear boundaries regarding learning expectations. While we are enthusiastic about fostering development, we recognise our limitations as a small working group and the risk of over-committing. It's essential to balance ambition with feasibility to avoid burnout and disappointment.
We have been tracking similar initiatives within ILEP and GPZL, learning from their successes and failures. Likewise, we've shared our experiences, contributing to a collaborative environment, which was evident at the NNN conference in Tanzania last year, where peers exchanged knowledge, addressed challenges, and explored opportunities. This collaborative approach fosters mutual growth and adaptation within our community.
MG: What successes there have been already?
JE: One of the significant milestones has been the successful development of the Leprosy Competency Framework and the completion of two pilot programmes. We eagerly anticipate the completion of the pilot in Nepal, which will help us to see the next steps more clearly.
Additionally, at the beginning of this year, we initiated discussions aimed at charting our future course. We've intensified our collaboration with our Head of People, Damaris Villanueva, and our global HR teams, so they can support us in our efforts to train and develop leprosy knowledge among our staff.
MG: What is the vision for the future of this initiative?
JE: Our vision is to embed learning as a fundamental aspect throughout The Leprosy Mission. We aspire to align every TLM country and unit toward the goal of enhancing leprosy knowledge and expertise. Our aim is not merely to fulfil a requirement but to genuinely improve outcomes for individuals affected by leprosy. While implementation may vary across different contexts and countries, the core principles of the Framework must be upheld.
© Sabrina Dangol
Each role will be assessed, and each staff member will have their leprosy knowledge assessed to see if they match their role. In time, we hope each member of our global team will have all the leprosy expertise they need to perform their role to the best of their ability.
In May, some of the Learning Working Group is meeting to look specifically at the Research and Learning Framework. In recognition that research and evidence-based practice is key to defeating leprosy, a separate, but linked framework has been developed. The workshop in May, will look at the research and learning competencies, and seek to identify what resources are already available and what gaps there are, so that we can develop them.
Ultimately, our vision to defeat leprosy and transform lives hinges on our ability to continually acquire and maintain the requisite knowledge and expertise. The Leprosy Mission is committed to deliberately and intentionally invest in this.
The Lift Leprosy Learning Project (funded by ILEP) started in 2023 by bringing together a pool of experts (including a few from The Leprosy Mission).
In 2024, the LLL team started development of an e-learning repository. So far, two courses are on the platform and are being piloted: one on stigma and mental wellbeing and one on scientific writing. The feedback from the stigma and wellbeing course is good, the scientific writing course is still ongoing. The e-learning repository will be officially launched at the NNN Conference later this year.
At the same time, an LRI-funded operational research project is being conducted in India and Nigeria. It is looking at capacity building of health workers in relation to leprosy knowledge and skills. The research is taking place in India and Nigeria, involving TLM teams in both countries.
We are very excited about the innovations in using e-platforms for learning and building leprosy expertise in countries across the world.