Evidence map›Paper›PMID 40765009›Full record

ArticleInfectious diseases of poverty2025

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 and 1 more

Abstract read
In one paragraph

Article in Infectious diseases of poverty, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

3 citing papers in PubMed.

  1. Article
  2. Article
  3. Review
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

11 authors.

Robin van Wijk *NLR | Until No Leprosy Remains, Amsterdam, the Netherlands. r.vanwijk@nlrinternational.org.ORCID http://orcid.org/0000-0002-0969-4155
Surya J M Baudoin *NLR | Until No Leprosy Remains, Amsterdam, the Netherlands.
Bernice EjioguCoventry University, Coventry, UK.
Upasana RegmiNLR | Until No Leprosy Remains, Amsterdam, the Netherlands.
Mathias DuckThe Leprosy Mission International, London, UK.
Ibrahim RabiuDepartment of Community Medicine, Gombe State University, Gombe, Nigeria.
Constanze VettelDAHW German Leprosy and Tuberculosis Relief Association, Würzburg, Germany.
Heleen BroekkampNLR | Until No Leprosy Remains, Amsterdam, the Netherlands.
Roos GeutjesInfoNTD.Org, Amsterdam, the Netherlands.
Ruth M H Peters *Athena Institute, Vrije Universiteit Amsterdam, Amsterdam, the Netherlands.
Ida J Korfage *Department of Public Health, Erasmus MC, University Medical Center Rotterdam, Rotterdam, the Netherlands.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

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.

Indexed as

Neglected DiseasesOrganizationsPatient ParticipationTropical MedicineHumansStakeholder ParticipationSurveys and QuestionnairesAction ResearchInclusionNeglected tropical diseasesNon-governmental organisationsParticipation

Identifiers

PMID40765009
PMCPMC12326779

What OpenQuestion holds

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LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.