Title: REDRESS: Reducing the Burden of Severe Stigmatising Skin Diseases through equitable person-centred approaches to health systems strengthening
Funder: Department of Health and Social Care

Abstract: Research question To what extent can integrated person-centred approaches improve the equitable and effective management of SSSDs whilst contributing to health systems strengthening? Background For many persons with severe stigmatising skin diseases (SSSDs), lack of access to effective service provision results in significant physical and psycho-social consequences, complex treatment journeys, and catastrophic socio-economic impacts. Integrated health system approaches to managing SSSDs have been proposed as a key solution to these challenges, to address equity and effectiveness issues. Liberia is one of the first countries in the world to develop a national integrated approach to managing SSSDs. However, evidence on optimal approaches, the quality of services delivered, and how to implement services at scale to ensure equitable delivery, is limited. Liberia is an OECD state of fragility, ranks 181/188 in the human development index and is prioritised by DFID and other global health stakeholders. Aims and Objectives Using a person-centred approach, we will evaluate, develop and adapt health systems interventions for the management of SSSDs in Liberia to generate learning for other settings in sub-Saharan Africa by: i) Identifying effective strategies to detect, refer, treat and support people living with SSSDs that are acceptable, affordable and sustainable especially amongst the most vulnerable ii) Designing and testing innovative health systems interventions that are responsive to both biomedical and social support needs by assessing persons living with SSSDs, family, and provider perspectives and priorities at different levels iii) Enhancing quality and equity of approaches that will see all persons living with SSSDs receiving essential, effective and affordable treatment, care and support at the individual, family, community and facility level. Methods & Timelines REDRESS will take a multi-disciplinary systems approach to assess SSSD management. There are four core themes of focus throughout: 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 and implementation, and capacity strengthening. We will utilise an action research approach to study design and delivery. During phase one (year one, formative research), we will evaluate existing integrated approaches to the detection, referral and treatment of SSSDs across our core themes. In phase two, (year two, planning), we will synthesise evidence from across core-themes and come together with community and health systems stakeholders to collaboratively develop new interventions. In years 2 and 3, phase three (action), will see the implementation of innovative interventions and phase four (observation and reflection), will focus on multi-disciplinary evaluation of our new interventions across our themes. In phase five (throughout, but intensified in Year 4, knowledge translation and policy change), we will work with National and Regional programme implementers to embed successful components of piloted interventions within routine management of SSSDs, so that impact can be realised at scale. Dissemination and Anticipated Impact Our approach will allow our partnership to co-develop and disseminate new knowledge with regional and global relevance on affordable, timely, appropriate and improved management strategies for SSSDs that reduce stigma and address other social issues for affected vulnerable populations.

Lay abstract: 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.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: INFECTION;SKIN