Making space for happenstance

A proposal for a different ‘Theory of Change’ to help understand and guide NTD policymaking practices

Bibliographic Data

ID15394780
AuthorsGemma Aellah (0000-0002-9713-2100, Brighton and Sussex Medical School, corresponding author), Anne Roemer-Mahler (0000-0002-3016-3973, University of Sussex), Shahaduz Zaman (0000-0003-1340-1869, Brighton and Sussex Medical School)
Year2026
Volume25
Issue1
Publication date2026-03-26
Open AccessYes
TypeARTICLE
VenueInternational Journal for Equity in Health (JOURNAL)
Journal identifiersISSN: 1475-9276 • E-ISSN: 1475-9276
PublisherBioMed Central (PUBLISHER • GB)
DOI10.1186/s12939-026-02823-0
PMID41888805
OpenAlexW7140932901
LanguageEN
References cited44

Historically, neglected tropical diseases (NTDs) have received far less global attention than the ‘big three’ diseases of global health (HIV, TB, and malaria), reinforcing health inequities experienced by those affected. Policy advocacy has been a necessary part of the work of NTD specialists, including researchers. One commonly used tool to support planned change is Theory of Change (ToC), employed by organisations such as the World Health Organization, non-governmental organisations, and research funders, who often require ToC diagrams at proposal stage. However, ToC practices can produce models of social change that are not particularly human-like, projecting an imaginary of change that is linear, predictable, unidirectional, mechanical, and largely detached from emotion, lived experience, or individual commitment. This paper offers an alternative perspective on how change often happens, informed by an anthropological case study of NTD policy change in practice. We do not argue that conventional ToC models ignore context or uncertainty altogether. Rather, our findings show that, in practice, especially in proposal-stage diagrams, ToC models often focus heavily on linear pathways and planned mechanisms, while treating assumptions and context as background notes rather than as active forces that can change how policy develops. Insights are drawn from a three-year anthropological research project examining how policy change related to NTDs unfolds in practice, focusing on the experiences of researchers and public health practitioners advocating internationally for three politically neglected NTDs: scabies, mycetoma, and podoconiosis. Methods include in-depth interviews, document analysis, and ethnographic observation. Narrative ethnographic analysis reveals that policy change in practice is often multidirectional, contingent, and shaped by happenstance. Individual biographies, emotional connections, and sustained personal commitment, observed ethnographically, operate as integral elements of policy change rather than as contextual add-ons, alongside more formal mechanisms. Dramatic events, such as the outbreak of the 2023 Sudan civil war, should not be understood as unusual disruptions of an otherwise stable Theory of Change, but as reminders of the limits of very rigid or mechanical models in capturing real-world unpredictability. Drawing on African ontological philosophy and rhizome theory, this paper proposes a plural and relational perspective on the reality of change. It subsequently argues for a reimagined Theory of Change and suggests practical ways of working with ToC that treat happenstance, serendipity, emotion, and human relationships as constitutive elements of change rather than residual factors. Such an approach may illuminate opportunities for influence that more linear models overlook and offer a more relatable and supportive way of thinking for those engaged in policy advocacy, contributing to more equitable global health responses

Context (archaeology · Ethnography · Health services research · Narrative · Perspective (graphical · Public health · Social policy · Theory of change · Dermatological diseases and infestations · Parasites and Host Interactions · Syphilis Diagnosis and Treatment · Health Policy

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