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

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Title: From words to action: the development of the Neglected Tropical Disease Inclusion Score Card (NISC).
Authors: van Wijk R; NLR | Until No Leprosy Remains, Amsterdam, the Netherlands. r.vanwijk@nlrinternational.org.; Department of Public Health, Erasmus MC, University Medical Center Rotterdam, Rotterdam, the Netherlands. r.vanwijk@nlrinternational.org., Baudoin SJM; NLR | Until No Leprosy Remains, Amsterdam, the Netherlands.; Athena Institute, Vrije Universiteit Amsterdam, Amsterdam, the Netherlands., Ejiogu B; Coventry University, Coventry, UK., Regmi U; NLR | Until No Leprosy Remains, Amsterdam, the Netherlands.; Lund University, Lund, Sweden., Duck M; The Leprosy Mission International, London, UK., Rabiu I; Department of Community Medicine, Gombe State University, Gombe, Nigeria., Vettel C; DAHW German Leprosy and Tuberculosis Relief Association, Würzburg, Germany., Broekkamp H; NLR | Until No Leprosy Remains, Amsterdam, the Netherlands., Geutjes R; InfoNTD.Org, Amsterdam, the Netherlands., Peters RMH; Athena Institute, Vrije Universiteit Amsterdam, Amsterdam, the Netherlands., Korfage IJ; Department of Public Health, Erasmus MC, University Medical Center Rotterdam, Rotterdam, the Netherlands.
Source: Infectious diseases of poverty [Infect Dis Poverty] 2025 Aug 05; Vol. 14 (1), pp. 80. Date of Electronic Publication: 2025 Aug 05.
Publication Type: Journal Article
Language: English
Journal Info: Publisher: BioMed Central Country of Publication: England NLM ID: 101606645 Publication Model: Electronic Cited Medium: Internet ISSN: 2049-9957 (Electronic) Linking ISSN: 20499957 NLM ISO Abbreviation: Infect Dis Poverty Subsets: MEDLINE
Imprint Name(s): Original Publication: London : BioMed Central, 2012-
MeSH Terms: Neglected Diseases* , Tropical Medicine* , Organizations* , Patient Participation*, Humans ; Stakeholder Participation ; Surveys and Questionnaires
Abstract: Competing Interests: Declarations. Ethics approval and consent to participate: An online self-check for research ethics, managed by the VU university’s research ethics review committee (BETHCIE), was completed prior to the study. An exemption for full ethical review was given. Written informed consent was obtained from interviewees and survey participants, personal information in the transcribed interviews was removed, and the surveys were anonymous. Data was stored on a secure server managed by NLR | Until No Leprosy Remains, in a protected folder that could only be accessed by the authors of this manuscript. Consent for publication: Not applicable. Competing interests: The authors declare that they have no competing interests.
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.
(© 2025. The Author(s).)
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Contributed Indexing: Keywords: Action Research; Inclusion; Neglected tropical diseases; Non-governmental organisations; Participation
Entry Date(s): Date Created: 20250806 Date Completed: 20250806 Latest Revision: 20250808
Update Code: 20250808
PubMed Central ID: PMC12326779
DOI: 10.1186/s40249-025-01340-6
PMID: 40765009
Database: MEDLINE
Description
Abstract:Competing Interests: Declarations. Ethics approval and consent to participate: An online self-check for research ethics, managed by the VU university’s research ethics review committee (BETHCIE), was completed prior to the study. An exemption for full ethical review was given. Written informed consent was obtained from interviewees and survey participants, personal information in the transcribed interviews was removed, and the surveys were anonymous. Data was stored on a secure server managed by NLR | Until No Leprosy Remains, in a protected folder that could only be accessed by the authors of this manuscript. Consent for publication: Not applicable. Competing interests: The authors declare that they have no competing interests.<br />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.<br />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.<br />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.<br />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.<br /> (© 2025. The Author(s).)
ISSN:2049-9957
DOI:10.1186/s40249-025-01340-6