NIHR REDRESS: Reducing the Burden of Severe Stigmatising Skin Diseases through equitable person-centred approaches to health systems strengthening

Our research aims to reduce illness, stigma, social exclusion and poverty caused by severe stigmatising skin diseases (SSSDs) in Liberia. Several Neglected Tropical Diseases (NTDs) present in the skin including destructive skin ulcers and elephantiasis. These diseases contribute to the global burden of SSSDs and constitute one of the top 10 causes of disability worldwide. Improving fair access to services is an important cornerstone of universal health coverage (UHC) (the provision of key health services to everyone, regardless of socio-economic status or gender, for example) and in attaining the Sustainable Development Goals. UHC requires action beyond single disease programmes and approaches to ensure that no one is left behind. SSSDs in Liberia are found in all 15 counties and are managed by the NTD programme. SSSDs result in severe physical and social consequences, including pain, economic hardship and severe stigmatisation, and can lead to mental ill-health and chronic illness. This proposal has been co-developed between researchers, patients and programme implementers at the request of the Liberian NTD programme and directly responds to priority health needs, detailed in the country s Investment Plan for Building a Resilient Health System . Liberia is one of the first countries globally to develop an integrated package of care for SSSDs. This means managing diseases with signs on the skin (e.g. lymphatic filariasis, leprosy, Buruli ulcer, yaws, onchocerciasis and scabies), through a combined approach at the local clinic. There is limited evidence about patient knowledge, priorities and experiences and the equity and effectiveness of the current approach. This proposal brings together globally recognised expertise in SSSDs, health systems strengthening, gender equity and participatory research from Liberia and the UK; and partners with both the Liberian NTD programme and people living with and affected by SSSDs. Our research is underpinned by principles of fairness and shared learning. We will work in five phases: Phase one develops a multi-disciplinary evidence base; phase two uses the evidence to work with stakeholders at all levels of the health system including patients, to develop innovative interventions to address the impact of SSSDs on the health system, patients and their families; interventions will be piloted in phase three, and phase four will focus on multi-disciplinary evaluation; phase five will see dissemination of new, innovative, effective and equitable interventions, including embedding them within existing health service delivery. There are four key areas of focus throughout the research cycle: clinical effectiveness, epidemiology and lab-systems strengthening, health financing, human resource management, and patient engagement and person-centred approaches; and two cross cutting themes: evidence translation, dissemination, implementation and capacity strengthening. Each theme demonstrates equitable partnerships between the UK and Liberian partners. We will ensure inclusion of patient advocates and community representatives in research design, delivery and dissemination