A Health-systems Journey Towards More People-centred Care: Lessons from Neglected Tropical Disease Programme Integration in Liberia

"Neglected tropical diseases (NTDs) are associated with high levels of morbidity and disability as a result of stigma and social exclusion. To date, the management of NTDs has been largely biomedical."



People-centred health systems (PCHS) are viewed as essential to ensure the efficient, effective and sustainable attainment of universal health coverage (UHC). An essential value in the development of PCHS is a movement away from a system focused on health institutions or disease to one that focuses on the needs of people, while recognising the central importance of relationships and values in driving systems change. The Liberian neglected tropical disease (NTD) programme is trying to establish a more integrated, person-centred approach to the management of NTDs and provides a case study of how shifts in vertical programme delivery can support overarching systems strengthening efforts that are designed to promote the attainment of health equity.



Data collection took place between December 2016 and December 2018 and involved interviews with key informants and ethnographic observations of meetings at national and international levels.



The first theme, policy development, focuses on NTD policy reform in Liberia in the wake of the Ebola epidemic. A culmination of factors, catalysed by the shock to the health system presented by the Ebola epidemic, created a window of opportunity for policy change. Programme implementers from all levels of the health system were described as key in shaping the way that the integrated case management policy was designed, developed, and implemented. However, no consensus was reached on the engagement of involving persons affected by NTDs in programme design and review meetings, and they were therefore excluded. Despite this, it was apparent from interactions with multiple programme implementers that care for the improved health and wellbeing of people affected by NTDs was at the forefront of their efforts and decision making.



The second theme, policy and programme implementation, is concerned with how policy change translates to change within the NTD programme. All of those interviewed are described as being committed to case management being "part of the regular health service delivery system of the country" (National Ministry of Health (MoH) staff) and described as seeking to maximise avenues for integration.



Finally, theme 3, reflections and the road ahead, explores challenges and the way forward for the NTD programme in Liberia as it aims to development more person-centred responses to NTDs. Decisions about which diseases to include as part of integrated case management approaches appeared to be based on a biomedical view of disease condition, with a focus on addressing "reversible" NTD-associated morbidity. However, over the duration of the study. this viewpoint began to shift, with programme implementers becoming increasingly reflective about the inclusion of additional disease conditions and the need to link with other sectors to address wider support needs of affected persons.



The researchers look at the results in the context of four key aspects of people-centred health systems:

1. Putting people's voices and needs first: A central tenant of putting people's voices and needs first is the way in which health systems are governed. Effective approaches to systems governance require consideration of the roles and relations of all systems actors, including international non-governmental development organisation (NGDO) partners and affected persons, as well as national governments. The use of patient advocates to support the participation of affected persons in priority setting and resource mobilisation is increasingly prioritised within the NTD community through networks such as NTD Non-Governmental Organisation Network (NNN). However, the results suggest that a critical challenge remains as to ensuring these actors are given a seat at the table in national policy and programme reform. Supporting the health system to understand the problems of people affected by NTDs from their own vantage point is a key and critical step in supporting health practitioners and policy implementers to design strategies that enable the delivery of high-quality care.
2. Viewing health systems as social institutions (relationships matter): The findings emphasise that the role of trust and ability of national programme staff to manage relationships with external (NGDO partners) and internal health systems actors was critical in shaping how far systems could respond and adapt. For example, interpersonal relationships mattered at implementation levels of the health system where integration of service delivery seemed most permissible.
3. Ensuring people centredness in service delivery: Engagement with community health structures is essential to improve interconnectedness between service users and providers and is critical for improving external accountability of the health system. However, it is important to reflect on how this engagement may contribute to or undermine the people centredness of service delivery. A critical dilemma for any vertical disease programme hoping to support the strengthening of PCHS is how best to support and motivate community health volunteers when they are not adequately or equitably supported within the generalised health system. Community-based comprehensive services should also seek to move beyond patient- or disease-centred interactions towards approaches that see the person as a whole.
4. Remembering that values drive PCHS: Care for and a desire to support people affected by NTDs were at the centre of key informants' motivation for the case management strategies development in Liberia and represent a key "push" factor toward person-centred response. However, the study found that NTD programme delivery in Liberia is still oriented toward diseases and patients. There was increasing recognition amongst programme implementers of the broader social impacts of NTDs, specifically in relation to mental ill health. However, the challenges implementers faced in having the resources or knowledge to respond emphasises that there is a need for further evidence generation on how to make best use of scarce resources to support in systems strengthening while meeting the holistic needs of affected persons.

The researchers conclude that assessing policy and practice against these four pillars of PCHS could enable the illumination of varying push and pull factors that can facilitate or hinder the alignment of DMDI interventions with the development of PCHS to support disease programme integration and the attainment of health equity in Liberia and elsewhere.