article · Infectious Diseases of Poverty
Involvement of affected communities is essential in designing services for neglected tropical diseases, yet non-governmental organisations often struggle to enable meaningful participation. To resolve this, researchers developed the Neglected Tropical Disease Inclusion Scorecard, known as NISC, through a collaborative two-phase process. Phase one used exploratory workshops with affected individuals and non-governmental organisation staff to identify core participation needs, including capacity building and inclusion across all operational stages, creating an initial draft spanning six domains. Phase two piloted the tool across ten sessions with organisations, collecting feedback from 22 interviewees and 43 survey respondents. The resulting self-assessment tool enables organisations to evaluate their internal decision-making, detect gaps in inclusion, and align services more effectively with the priorities of affected populations. Participant feedback confirmed the tool's usability while highlighting the importance of organisational commitment, local contextualisation, and dedicated communication domains.
Effective healthcare interventions require the meaningful engagement of the communities they aim to serve. By providing a structured self-assessment framework, the scorecard enables non-governmental organisations to recognise institutional gaps in community engagement. This helps organisations tailor neglected tropical disease programmes to genuine local priorities, ensuring interventions are more equitable, acceptable, and impactful for marginalised populations.
The scorecard serves as an applied, piloted organisational assessment tool intended for non-governmental organisations and global health bodies managing neglected tropical disease programmes. Having undergone pilot testing with employees and community members, the tool appears near-market or ready for direct operational adoption. While designed primarily for non-profit and public health delivery rather than commercial sale, it could be adopted by consultancies or evaluators focused on health governance, participatory appraisal, and social impact auditing.
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BACKGROUND: The importance of patient participation in designing and delivering services for persons affected by neglected tropical diseases (NTDs) has gained increasing recognition. Responding to this, persons affected by NTDs urged NTD-focused non-governmental organisations (NGOs) to take action. These NGOs are pivotal in addressing healthcare disparities and reaching marginalised communities. To address the insufficient progress on participation, a participatory initiative was launched to develop a tool designed to support NGOs in fostering inclusion and ensuring the meaningful engagement of affected persons in their organisational decision-making processes. METHODS: This research used an iterative, mixed-methods approach involving stakeholder input, semi-structured interviews, and surveys across two phases. Phase 1 included exploratory workshops with persons affected by NTDs and NTD NGO employees which led to the development of a first draft of a self-assessment tool. Phase 2 involved piloting the tool in NTD NGOs. Data were gathered via pre- and post-pilot interviews and surveys. Thematic analysis was used for the qualitative data and descriptive analysis for the quantitative data. RESULTS: In phase 1, exploratory workshops revealed that meaningful participation involves creating environments where affected persons can openly share priorities and build their capacity. Workshop participants emphasised the need of inclusion at all stages of NGO activities. These insights informed the draft NTD Inclusion Scorecard (NISC), covering six domains. In phase 2, ten pilot sessions were conducted, feedback was gathered from 22 interviewees and 43 survey participants, focusing on the NISC's usability and relevance. While feedback on the NISC was positive, participants highlighted the need for contextualisation, organisational commitment, and adding a communication domain to the NISC. CONCLUSIONS: The NISC is a self-assessment tool for NTD organisations, designed to enhance internal decision-making by fostering awareness of the importance of including the perspectives of persons affected by NTDs. By using the NISC, NGOs can identify gaps in inclusion and participation, improve their decision-making processes and provide services that are relevant and impactful for persons affected by NTDs. This tool provides insights that can guide NGOs in strengthening their role in promoting inclusion and increasing the effectiveness of their programmes.
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DOI: 10.1186/s40249-025-01340-6
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