Leaving no one behind in NTD programmes: lessons from implementing a risk assessment tool

Abstract

Sightsavers is committed to a ‘leave no one behind’ approach, recognising that marginalised communities are at greater risk of being excluded from neglected tropical disease interventions. In this article we reflect on the rollout of a Leave No One Behind risk assessment tool across various contexts. We highlight lessons learned from implementation and share findings, including a use case from Cameroon’s East Region. We conclude that actions generated from the tool lead to positive programme outcomes for marginalised populations. Such approaches are needed if countries are to progress towards disease control and elimination.

Introduction

A country’s commitment to control and eliminate neglected tropical diseases (NTDs) and progress towards universal health coverage (UHC) requires effective coverage of populations with mass drug administration (MDA), clinical and self-care of morbidity and basic water and sanitation interventions. Access to these interventions is influenced by cultural, social and economic factors, often specific to local and geographic contexts. Aligning with the World Health Organizations (WHO) 2030 NTD roadmap efforts,¹ and recognising that reaching marginalised populations is pivotal to achieving UHC,² Sightsavers is committed to ensuring NTD programmes provide equitable access to high-quality health services for all, regardless of factors such as disability, age, gender, or location. Programmes should also consider ethnicity, socioeconomic status, the mobility of seasonal or migrant workers, amongst others, as these groups are often excluded from interventions and face a higher risk of disease.³ These factors could delay achievement of elimination goals and pose a risk of disease persistence and recrudescence once MDA campaigns have stopped.

In response to this and building on previous programmatic efforts that contribute to UHC,⁴ Sightsavers developed and rolled out the Leave No One Behind (LNOB) assessment tool, an Excel-based (Microsoft, Redmond, WA, USA) participatory risk assessment tool that is freely available on Sightsavers’ NTD Open Resource Hub.⁵ The tool is designed to facilitate discussion between NTD stakeholders, the Ministry of Health (MoH), non-governmental development organisation partners, marginalised groups and local stakeholders on how to reach marginalised groups. Results from discussions then influence programming through tailored action plans that deliver more-accessible health services to marginalised groups. For more detailed information on the components of the tool and guidance, see the Supplementary Material.

Figure 1 shows the implementation units (IUs) supported with LNOB risk assessments between October 2021 and May 2024. This includes six contexts across four countries: Bijagos Island Region, Guinea Bissau; South-West Region, Burkina Faso; East Region, Cameroon; and completed separately across Nigeria in Kebbi, Kogi and Sokoto States (n=6). It also includes pilot assessments in Chad and the Kebbi IU (Sokoto State, Nigeria), where the tool was initially rolled out. Note that insights from these pilots are excluded in the article, as they informed significant revisions to the tool used in subsequent assessments. The tool was introduced during pre-intervention planning at a regional or state level to identify risks for marginalised groups who may be missed during activities, as well as mitigations to those risks. Risk scores were calculated to identify an overall risk of exclusion associated with the planned activity. Action plans were then developed collaboratively to address these risks in the upcoming implementation.

Figure 1.

Implementation Units (IUs) supported through the LNOB risk assessment.

To assess and reflect on the use and impact of the LNOB tool, quantitative and qualitative analysis was conducted using data and open-text responses from all completed assessments.

By sharing insights and a case study example from Cameroon, we highlight how the LNOB tool supports data collection on marginalised populations and informs programme adaptations to improve inclusion and reach underserved populations effectively.

Lessons from implementation

Lesson 1: Leverage the expertise of relevant organisations and associations representing marginalised communities

Across the completed assessments identified groups were often contextually specific, but the most frequently marginalised groups identified were persons with disabilities (16 times), followed by fishermen (10 times), nomadic communities (9 times) and women (9 times). Note this is not an exhaustive list with these figures indicating the most frequently identified marginalised groups through open-text comments in completed risk assessments.

A diverse range of country-specific organisations representing marginalised groups contributed to the assessments, sharing concerns about programme accessibility and inclusivity and offering strategies to reduce the risk of low coverage. Ensuring early and sustained engagement with civil society organisations (CSOs) and interlocuters between NTD programmes and communities was key in establishing appropriate and impactful mitigation actions across programmes. The encouragement of CSO participation in the LNOB assessment process itself creates more opportunity for them to be included within the planning and implementation of NTD programme activities.

Lesson 2: Make sensitisation materials accessible to all and engage marginalised groups in the design of social mobilisation efforts

Across the broad contexts in which the LNOB tool was used, 28% of assessments identified a high or moderate risk of excluding marginalised groups. In particular, 67% of completed risk assessments identify the inaccessibility of health information as a risk contributing to low coverage, while 44% highlight the acceptability of activities as another risk factor. This indicates that a predominant issue for national NTD programmes is to ensure that awareness-generating materials and messaging is accessible to all and that the acceptability of certain activities is frequently influenced by socio-economic factors (e.g. traditional belief systems). Exactly 50% of all completed LNOB risk assessments identified that the national programmes and partners do not do enough to involve marginalised groups in the development of social and behavioural change or social mobilisation materials and messages. By identifying inadequacies in the design of how health information is conveyed or how services are delivered, it is envisaged that NTD programmes will more likely address those design flaws through more inclusive actions that embrace a co-creation process with marginalised populations.

Lesson 3: Always ensure that actions for programme adaptation are relevant and implementation ready

Across 67 total actions generated across all completed tools, 52% were judged to be cost neutral while 22% of all actions indicated establishing or enhancing partnerships between stakeholders. As of June 2024, 48% of actions generated by countries through use of the tool were considered by the national NTD programme to have been completed, with 43% under way. Most completed actions were embedded ahead of the next planned MDA (a time frame of, on average, 1–3 months prior), suggesting that the actions generated by the tool are both relevant and timely for the context of NTD programming and are being implemented. Table 1 illustrates key examples of the types of actions developed by theme. Experiences have shown that achievable and appropriate actions have been operationalised consistently across a diverse range of contexts.

Table 1.

Key examples of the types of actions developed from all contexts where the risk assessment was completed, by theme

Theme	Examples
Policy and planning	Mapping out populations at risk through establishing partnerships with organisations that represent marginalised populations and coordination with authorities/local government
Budgeting for LNOB activities	Budgeting for enhanced social behaviour change activities and for additional involvement of community volunteers from marginalised groups
NTD programme implementers	Recruiting representatives from marginalised groups as community drug distributors (persons with disabilities, women, nomadic groups etc.) and strengthening training on stigma, discrimination and inclusion to managers and supervisors
Sensitisation and social mobilisation	Development of tailored and culturally specific social behaviour change materials and messaging in local languages, scale up of social mobilisation activities across communities and schools and involvement in the design and dissemination of messaging
Event preparedness and response planning	Ensuring availability of drugs and resources and preparing ‘mop-up’ strategies for rapid response in known areas of low coverage during an MDA for populations more at risk of being missed
Monitoring and evaluation	Tracking the involvement of marginalised groups in MDAs, establishing disaggregated indicators (e.g. ethnicity, gender, persons with disabilities) and use of inclusive data in relevant planning meetings to more effectively monitor and evaluate future impact

Case study: East Region, Cameroon

In November 2023, Sightsavers facilitated an LNOB workshop in Bertoua, the capital of Cameroon’s East Region. A total of 37 participants formed an assessment team supported by the National NTD programme and MoH. As per Implementation Lesson 1, the expertise of relevant organisations and associations representing marginalised communities was leveraged. Participants included the National NTD programme; MoH; Ministry of Education; associations representing refugee camps, migrants, women and Catholic communities; representatives of local villages and other implementing partners. The workshop aimed to use the LNOB risk assessment tool to ascertain what mitigation measures were needed ahead of MDA to treat for schistosomiasis and soil-transmitted helminths and to ensure that identified marginalised populations, including mining communities, were included.

Identified risks

The assessment produced a total risk score of 5 (considered ‘moderate’) and a total mitigation score of 37% (showing unpreparedness to mitigate low coverage). As per the LNOB risk assessment score matrix (See Supplementary Material for a further explanation on assessment scores), this constitutes a high risk of exclusion, where significant efforts are needed to reduce those risks. The assessment team used participatory methods to identify at-risk populations in specific areas for future treatment inclusion. A total of 14 groups were identified, including internally displaced children, refugees, mining communities, out-of-school children and children in mining fields. It was recognised that, historically, mining communities in particular had routinely been missed in programming and—as per Implementation Lesson 2—had not been engaged meaningfully through social mobilisation efforts and information sharing.

Actions developed

An action plan targeting mining communities was generated that focused on relevant and implementation-ready activities (as per Implementation Lesson 3). This included an exercise to map the locations of mining populations. This mapping would make certain that the working patterns of miners was taken into account during treatment distribution, that enhanced social mobilisation approaches were developed and that dedicated teams were established to reach children living within mining communities. Additionally, community drug distributors were selected and trained based on their relationship with mining communities, as they could utilise their specific understanding of the communities’ behaviours and needs and establish trust. Finally, leaders of the mining community were engaged to tailor messaging to the community itself.

Outcomes

While the Batouri health district has always had high coverage,⁶ it is important to note that coverage data at a district level often ‘hides’ poor coverage of more marginalised communities within the district. After implementation of actions developed through the LNOB assessment, a coverage evaluation survey (CES) showed that coverage was greater than the minimum 75% required by the WHO, with a coverage achievement of >80%. The CES also revealed high compliance, with >99% of those offered drugs taking the medication. Notably within Tapare—a mining hotspot—community registers indicated treatment figures rose from 115 individuals in 2023 to 440 in 2024, representing a 282% increase. Feedback from communities within the CES emphasise the effectiveness of the LNOB strategies undertaken.

Outlook

This article illustrates the work of Sightsavers and MoHs in ensuring that marginalised communities are not excluded from NTD interventions. It also underscores the important role of implementing partners to facilitate the convening of stakeholders who can identify risks and share technical programmatic expertise to ensure that NTD interventions are inclusive and accessible. The use of the LNOB tool, freely available and tailorable, has allowed several NTD programmes to identify a wide range of risks. This experience has also shown that bespoke mitigation is possible—as captured in the example of Cameroon—through the development of cost-neutral and partnership-focused recommendations for programme adaptation. While the tool does not entail high costs and could be adapted by other partners and national programmes, it is not without limitations. Thorough preparation is required, especially to ensure that marginalised groups are well represented in assessment teams, and commitment and prioritisation are required to ensure action plans are effectively implemented ahead of NTD interventions. It is important that MoHs are accountable for action plans and the continued inclusion of marginalised groups in NTD programming beyond the tool’s use; progress towards disease elimination and control requires these sustained efforts.

Authors’ contributions

DH conceived the article with support from TM and PD. DH, TM, PD, SA, JO and NM contributed to writing and revising the manuscript. DH edited the content and coordinated edits of the authors’ contributions. All authors read and approved the final version for publication.

Funding

None.

Competing interests

None declared.

Ethical approval

Not required.

Data availability

The data underlying this article cannot be shared publicly due to the sensitive nature of responses provided by assessment teams on programmatic activities and reporting and to protect the privacy of individuals who participated in LNOB workshop assessments. The data will be shared upon reasonable request to the corresponding author to then coordinate with the associated Ministries of Health.