From words to action: the development of the Neglected Tropical Disease Inclusion Score Card (NISC)

Area of Science:

• Public Health
• Health Services Research
• Community Engagement

Background:

• Patient participation in designing and delivering services for neglected tropical diseases (NTDs) is increasingly recognized.
• Persons affected by NTDs and NTD-focused non-governmental organizations (NGOs) are key stakeholders in addressing healthcare disparities.
• A participatory initiative developed a tool to support NGOs in fostering inclusion and meaningful engagement of affected persons.

Purpose of the Study:

• To develop and evaluate a tool that supports NGOs in meaningfully engaging persons affected by NTDs in their decision-making processes.
• To enhance the inclusion of affected persons' perspectives in the design and delivery of NTD services.
• To improve the relevance and impact of NTD programs through enhanced participation.

Main Methods:

• An iterative, mixed-methods approach was employed across two phases, incorporating stakeholder input.
• Phase 1 involved exploratory workshops and the development of a draft self-assessment tool.
• Phase 2 piloted the tool in NTD NGOs, gathering data via pre- and post-pilot interviews and surveys, analyzed using thematic and descriptive analysis.

Main Results:

• Exploratory workshops highlighted the importance of creating inclusive environments for open dialogue and capacity building for affected persons.
• The NTD Inclusion Scorecard (NISC) was developed, covering six domains, informed by stakeholder input.
• Pilot testing of the NISC received positive feedback, with suggestions for contextualization, organizational commitment, and the addition of a communication domain.

Conclusions:

• The NTD Inclusion Scorecard (NISC) is a self-assessment tool designed to improve internal decision-making within NTD organizations.
• The NISC fosters awareness and identifies gaps in the inclusion and participation of persons affected by NTDs.
• Utilizing the NISC can guide NGOs in strengthening their role, promoting inclusion, and increasing the effectiveness of their programs for NTD-affected populations.