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

Robin van Wijk; Surya J M Baudoin; Bernice Ejiogu; Upasana Regmi; Mathias Duck; Ibrahim Rabiu; Constanze Vettel; Heleen Broekkamp; Roos Geutjes; Ruth M H Peters; Ida J Korfage

doi:10.1186/s40249-025-01340-6

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

Robin van Wijk
, Surya J M Baudoin
, Bernice Ejiogu
, Upasana Regmi
, Mathias Duck
, Ibrahim Rabiu
, Constanze Vettel
, Heleen Broekkamp
, Roos Geutjes
, Ruth M H Peters
, Ida J Korfage

School of Nursing, Midwifery and Health

Research output: Contribution to journal › Article › peer-review

3 Citations (Scopus)

3 Downloads (Pure)

Abstract

BackgroundThe 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.MethodsThis 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.ResultsIn 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.ConclusionsThe 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.

Original language	English
Article number	80
Number of pages	14
Journal	Infectious Diseases of Poverty
Volume	14
Issue number	1
DOIs	https://doi.org/10.1186/s40249-025-01340-6
Publication status	Published - 5 Aug 2025

Bibliographical note

© The Author(s) 2025. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder

Funding

This work was supported by the International Federation of Leprosy Organisations (ILEP), ILEP Members join forces to support major initiatives in scientific research, undertake projects with potential global impact, develop teaching materials, undertake training, and respond to the needs of national leprosy programmes. ILEP had no role in study design, data collection and analysis, decision to publish, or preparation of this manuscript. Additional funds were provided by Deutsche Lepra- und Tuberkulosehilfe e.V., NLR | Until No Leprosy Remains and The Leprosy Mission International. Project partners from the latter three organisations were involved in the study design, data collection and analysis, the decision to publish and preparation of the manuscript.

Funders
DAHW German Leprosy and Tuberculosis Relief Association
International Federation of Leprosy Organisations

Keywords

inclusion
Action Research
Participation
Neglected Tropical Diseases
Non-governmental Organisations
Humans
Tropical Medicine
Patient Participation
Organizations
Neglected Diseases
Surveys and Questionnaires
Stakeholder Participation

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

Access to Document

10.1186/s40249-025-01340-6Licence: CC BY

Ejiogu2025VoRFinal published version, 1.35 MBLicence: CC BY

Cite this

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

abstract = "BackgroundThe 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.MethodsThis 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.ResultsIn 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.ConclusionsThe 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.",

keywords = "inclusion, Action Research, Participation, Neglected Tropical Diseases, Non-governmental Organisations, Humans, Tropical Medicine, Patient Participation, Organizations, Neglected Diseases, Surveys and Questionnaires, Stakeholder Participation",

author = "\{van Wijk\}, Robin and Baudoin, \{Surya J M\} and Bernice Ejiogu and Upasana Regmi and Mathias Duck and Ibrahim Rabiu and Constanze Vettel and Heleen Broekkamp and Roos Geutjes and Peters, \{Ruth M H\} and Korfage, \{Ida J\}",

note = "{\textcopyright} The Author(s) 2025. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article{\textquoteright}s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article{\textquoteright}s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder",

year = "2025",

month = aug,

day = "5",

doi = "10.1186/s40249-025-01340-6",

language = "English",

volume = "14",

journal = "Infectious Diseases of Poverty",

issn = "2095-5162",

publisher = "BioMed Central",

number = "1",

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TY - JOUR

T1 - From words to action

T2 - the development of the Neglected Tropical Disease Inclusion Score Card (NISC)

AU - van Wijk, Robin

AU - Baudoin, Surya J M

AU - Ejiogu, Bernice

AU - Regmi, Upasana

AU - Duck, Mathias

AU - Rabiu, Ibrahim

AU - Vettel, Constanze

AU - Broekkamp, Heleen

AU - Geutjes, Roos

AU - Peters, Ruth M H

AU - Korfage, Ida J

N1 - © The Author(s) 2025. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder

PY - 2025/8/5

Y1 - 2025/8/5

N2 - BackgroundThe 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.MethodsThis 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.ResultsIn 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.ConclusionsThe 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.

AB - BackgroundThe 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.MethodsThis 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.ResultsIn 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.ConclusionsThe 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.

KW - inclusion

KW - Action Research

KW - Participation

KW - Neglected Tropical Diseases

KW - Non-governmental Organisations

KW - Humans

KW - Tropical Medicine

KW - Patient Participation

KW - Organizations

KW - Neglected Diseases

KW - Surveys and Questionnaires

KW - Stakeholder Participation

U2 - 10.1186/s40249-025-01340-6

DO - 10.1186/s40249-025-01340-6

M3 - Article

SN - 2095-5162

VL - 14

JO - Infectious Diseases of Poverty

JF - Infectious Diseases of Poverty

IS - 1

M1 - 80

ER -