Making space for happenstance: a proposal for a different ‘Theory of Change’ to help understand and guide NTD policymaking practices

Abstract

Background

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.

Methods

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.

Results

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.

Conclusions

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.

Introduction

Trying to establish how productive change can be achieved is a key preoccupation of those working on neglected tropical diseases (NTDs), a diverse collection of ancient diseases of poverty, affecting more than 1.4 billion people [1, 2]. Neglected tropical diseases (NTDs) are estimated to account for 14.19 million disability-adjusted life-years (DALYs), representing roughly 1% of the global burden of disease, with the true extent of human suffering likely substantially underestimated by DALY metrics [2–4]. However, despite their huge burden, historically, NTDs were not initially recognized as a global public health problem. They affect marginalized populations who have had little political voice or visibility and have been overshadowed in policy and funding arenas by malaria, HIV and TB, the ‘Big Three Diseases’ of global health [5].

The papers in this special issue collectively demonstrate how a social science perspective can shed light on the social, structural, and political determinants of NTDs and inequity [6–11]. This paper extends that social science examination into the intricacies of NTD policy and political environments, exploring what shapes how policy and advocacy efforts unfold. For many NTD advocates, efforts in recent years have focused on securing the inclusion of specific diseases onto the World Health Organization (WHO)’s official list of NTDs [12]. Being included on this list, and the global recognition it activates, is widely understood as a significant step towards change, or at least the possibility of change, by increasing the visibility of diseases to global funders and policymakers. This paper therefore takes as its case study the advocacy efforts of a small group of people working to secure action on three of the most neglected of neglected tropical diseases: mycetoma, scabies, and podoconiosis. These three diseases were not included in the original WHO NTD list in 2006 [13–16], rendering them effectively invisible at a crucial moment in the public and policy history of NTDs. As a result, a small group of researchers and public health practitioners from both the global North and South, many without prior policy experience, came together to engage in efforts to effect significant global policy change. Consequently, in 2016 mycetoma was added to the WHO list, followed in 2017 by scabies after extensive advocacy, largely driven by researchers. Advocates for podoconiosis also applied for its inclusion in 2017, but this was rejected. This paper explores their stories and trajectories of their efforts to understand how change happens in practice, and the implications for the use of Theory of Change tools.

We will now provide a brief history of the overall development of NTDs as a brand, followed by exploration of the Theory of Change approach to planning change commonly used by NTD advocates and others. This will then be contrasted with stories about a specific example of change in practice, gathered from interviews with those mycetoma, scabies and podoconiosis advocates who lobbied the WHO to include ‘their’ forgotten NTDs on its official list. Despite widespread use of Theory of Change in global health, few studies critically examine how these models align with the realities of NTD policymaking; this paper addresses that gap through consideration of this case study.

A brief history of the development of a brand

To understand this advocacy landscape, it is first useful to trace how the concept of NTDs evolved as a recognizable ‘brand’ in global health. Collective efforts at effecting change in the 1990s and 2000s, largely led by scientists, were first primarily focused on gaining ‘brand recognition’ and building an advocacy movement to achieve a critical mass for action [12, 17]. In many ways, these efforts have been extraordinarily effective. They included coining and popularising the term ‘neglected tropical diseases.’ This term was put to good use as mobilizing tool: as described by Allotey et al.: ‘the choice of the word ‘neglect’ is pointed and loaded, forcing us to reflect on our social obligations’ [18]. In 2003 there were only six references to the term NTD on the PubMed database which lists scientific public health publications. In 2006 this rose to 28, increasing every year until 2025, where there were over 2000 references. Essentially, NTDS did not exist as a concept before 2003. But over the last twenty years NTDs have become a global brand, even given their own annual World NTD Day (30th January) in 2020 and two high level political declarations of global commitment in London in 2010 and in Kigali in 2022 [19]. NTDs are now a mainstream concern and joined the Big Three of HIV, TB and Malaria as part of the “Gang of Four” in the 2015 Sustainable Development Goals, the development targets set by all UN member states to reach by 2030. SDG Target 3.3 specifically speaks directly to ending NTDs epidemics by 2030 [20].

The capacity to do much with little has been part of the advocacy rhetoric of NTDs, and a selling point for donors. For example, the NGO Global Network for Neglected Tropical Diseases gives a concrete figure of 50 cents per person for a year of preventative treatment in mass drug administration (MDA) campaigns for five NTDS. This affordable solution was held up in direct contrast with other, more expensive, diseases. Scientist Alan Fenwick described MDA as the ‘best buy for public health’ [21]. This rhetoric caught the eye of Alan McCormick, a partner at global investment firm Legatum. Following an interview Fenwick gave to the Financial Times in 2006, the Legatum Group described how:

… a phrase from an interesting article on philanthropy implanted itself in his mind: that such treatable ailments ‘do not need innovation but simply modest funding and a little imagination in order to distribute drugs to those in need’ … He was inspired by the idea that it might be possible to change the lives of millions, to free them from the burden of devastating illness, for as little as 50 cents per person (cited in 5).

This ‘implantation’ in the mind of Alan McCormick led to the Legatum Foundation establishing The END Fund as an NGO to finance control initiatives and new programmes to control or eliminate the five most common NTDs. This was a significant action for change on the road to elimination of these NTDs.

However, despite some gains made since the 2010 London Declaration, the route to change has not been as easy as promised, or as depicted in the accounts of philanthropists like Alan McCormick described above [22]. Although perceived as straightforwardly simple to solve in early advocacy accounts, NTDs are now, conversely, conceptualized as a ‘wicked problem’ [23, 24]. ‘Wicked problems’ in public policy are those which are complex, open-ended and intractable [25]. Although on first glance, NTDs may seem like a ‘tame’ problem, increasing evidence from qualitative studies indicate this is not the case, especially given that a central root cause are the intersections between poverty, global inequalities and political will [26]. A case in point is the example of podoconiosis, a debilitating foot swelling NTD caused by walking barefoot on volcanic soil and therefore entirely preventable by shoe-wearing. However, this seemingly simple solution has proved incredibly challenging to deliver, with multiple attempts to change shoe wearing ‘culture’ in affected communities failing, due to a complex mix of human behavior and socio-economic structural inequalities [27]. Another major ‘black box ‘of understanding causal pathways to policy change in the NTD field has been understanding exactly how to ensure sustained uptake of proven interventions by health and political systems, which is shockingly low and slow across the board [28].

There have been, therefore, proposals for a need to take a ‘systems thinking’ approach to the wicked problem of NTDs, one which acknowledges that continued ‘quick wins’ are unlikely and embraces complexity as a key feature of social organization. Systems thinking aims to:

…help us to overcome the linear and reductionist approaches commonly applied to problem solving in the social sectors and to reinvent our policies and institutions according to this holistic, dynamic view (23 p. 2).

However, taking such an approach requires developing a deep understanding of complexity. Furthermore, despite the greater global attention given to NTDs, they still continue to be chronically underfunded compared to the ‘big three’ diseases [29–31]. There is an estimated £200 million annual funding gap [32] and, further, different NTDs receive different levels of attention. The WHO opened its official list of NTDs in 2006 with 13 core NTDS [33]. Scabies, mycetoma and podoconiosis were not included. The list was expanded to 17 diseases in 2010. Mycetoma was added in 2016, and scabies in 2017. Podoconiosis has yet to be formally included as a distinct disease and may never be, although it is currently considered part of the broader category of skin-related NTDs.

Therefore, despite early successes, those working within NTD policy and practice are faced with the ongoing challenges of working on a complex problem with scarce resources, a pressing need to maximize outcome and unequal political visibility for certain NTDs. This is even more of challenge due to the most recent dramatic cuts in overseas development funding by several donor countries including the UK and USA.

Theory of change

Having outlined the historical background of NTD advocacy, the discussion now turns to the conceptual framework currently most frequently used to guide advocacy efforts — Theory of Change, or ‘ToC’. Theory of Change modelling has become a central activity for many organizations working towards NTD elimination. It refers to a tool or set of tools that involve planning a causal pathway from ‘here to there’ by specifying what is needed for goals to be achieved and, importantly, by having stakeholders articulate their underlying assumptions about how change happens [34].

Theory of Change activities have, in recent years, permeated many different aspects of NTD practice – policy, research, and intervention - since the more general popularization of the tool in the 2000s. In 2021 the WHO launched ‘Ending the neglect to attain the Sustainable Development Goals: a road map for neglected tropical diseases 2021–2030’, a high-level strategic document and advocacy tool, aimed at strengthening programmatic response to NTDs [35]. Alongside this roadmap, the WHO produced the ‘Neglected Tropical Diseases Monitoring and Evaluation Framework’, a companion document to the WHO NTD roadmap, which includes an outlined Theory of Change for achieving the intended high-level outcomes and impact set forth in the WHO NTD Road map [36]. This Theory of Change is included as a specific module in the WHO open course on NTD monitoring and evaluation, which all those working on NTDs are encouraged to complete ([37], see also WHO’s broader technical guidance on developing an evidenced based ToC for health [38]). Non-governmental organisations have also taken up the use of Theory of Change. For example, the international non-governmental organization, Youth Combatting NTDs ran a Theory of Change workshop in 2022 in order to create its 2022–2025 strategic document [39]. Theory of Change has also gained prominence within NTD research, with many funders requesting a Theory of Change diagram as part of the research proposal. Research projects often include Theory of Change workshops as part of formative work, or as basis for proposed intervention design [40, 41]. And, although less used within national government programmes, there is some evidence of increased use, such as the production of a Theory of Change for NTD programmes drawing on implementation strategies used in Haiti [42].

What is theory of change?

The Theory of Change methodology was popularized by Weiss in 1995 as an evaluation framework to describe and plan how a long-term outcome can be achieved through a logical sequence of preconditions, with movement between them usually represented by unidirectional arrows, although feedback loops can be included, with the latest WHO technical guidance on Theory of Change describing it as:

‘...a framework for depicting a sequence of causal steps that describe how an intervention, programme or strategic plan is expected to lead to outputs, outcomes and impact. It is presented as a diagram containing preconditions, expected results, rationales, assumptions, and indicators.’ [38].

In practice, Theory of Change is commonly developed through participatory workshops at the beginning of projects that deliberate and then map assumed causal pathways between interventions, context, and intended outcomes, resulting in a visual logic model or diagram, examples of which are shown in Figs. 1 and 2 [43–45].

Fig. 1.

National institute of health research theory of change to visually represent its global health research portfolio. https://www.nihr.ac.uk/documents/global-health-research-portfolio-theory-of-change/26036 Accessed 20.11.2023

Fig. 2.

Theory of Change from the WHO’s Neglected Tropical Diseases Monitoring and Evaluation Framework, 2021. https://www.who.int/publications/i/item/9789240023680

There is a significant body of nuanced literature on Theory of Change that considers the complexity of such models and the practices required to generate them [46–48]. In fact, technical guidance invariably stresses that Theory of Change should be built from a flexible, interactive and participatory process, carefully consider context, involve a continuous process of analysis and discussion, and remain a ‘living product’ that must be constantly updated and adapted [38].

However, the structured development format and ‘simple’ outcome product of a clear Theory of Change diagram is often seen as one of its major selling points. NPC, as a think tank and consultancy for the social sector describes it as a ‘structured and systematic process for thinking things through’, one required because ‘the issues we are trying to tackle are complex, so there is a risk that [without a Theory of Change] our reflections can become too open-ended, unfocussed and not produce results’ [49].

Existing critiques of theory of change

While Theory of Change has proven influential, several critiques have emerged that help contextualize its limitations and relevance to NTD advocacy. The former UK government Department for International Development (DFID) has been one of the major proponents of the use of Theory of Change models and had been working formally with Theory of Change in in its programming since 2010. However, its use has not been without critique. They argue that one of the central practices of Theory of Change activity is making assumptions about change explicit [50]. Yet, there are assumptions within Theory of Change literature that are not themselves explicit, namely that change happens in a (largely forward looking) sequence or ‘pathway’ and it follows a ‘logic.’ Logic is a word heavily used within Theory of Change guidance. For example, DIFID describes Theory of Change as about identifying a ‘sequence of logically-linked events leading to long-term change’ (50 p. 14). On a deeper level, this activity relates to working out ‘how you see the world, and how change happens and how you are going to intervene based on that understanding’ (theory of change practitioner quoted in 50 p20). Understanding the assumptions that affect how people ‘see the world’ was identified in DFID’s review of the use of Theory of Change models as a key problem, with some of their respondents stating they felt that this was hard to articulate, and so their own use of such models was often ‘superficial’ and ‘mechanistic’ [50].

One of the other significant critiques of the use of Theory of Change modelling relates to another uninterrogated assumption: that the organizations creating such models assume that ‘change in a society revolves around them and their program, rather than around a range of interrelated contextual factors, of which their program is part’ [51]. Another popular critique of Theory of Change is that although the need to continually revise and revisit is stressed in guidance, in reality the practice serves to ‘fix agreements’ in diagrammatic form at an early stage, rather than act as a living, flexible document helping to explore how change in a particular context might be achieved [52]. In this sense, the Theory of Change diagram creates, rather than explains, our ideas about change.

Theories of social change

To broaden the analytical lens, this section considers philosophical and anthropological theories that conceptualise how change unfolds in practice, offering alternatives to Theory of Change. It is important to note that Theory of Change is distinct from sociological or philosophical theories which describe (or ‘theorize’) how and why change occurs, in that Theory of Change is action-oriented, focused on driving and planning change, rather than explaining the empirical/social phenomenon. Arguably, use of the term ‘Theory’ is a misnomer, as most Theory of Change models are not grounded by generalizing deep thinking about how change happens, beyond the specific mechanisms of an individual project [53]. Sometimes groups do cite, often in passing, that they have utilized theories such as ‘empowerment theory’ or ‘behavioral change theory’ to guide their thinking and planning [54]. But these are typically narrow theories that inform specific mechanisms of intervention, rather than theories concerned with the very nature of change itself. To counter the critique of Theory of Change as superficial and ‘fixing’ agreements rather than offering a thoughtful explanation of change, it might, therefore, be useful to turn to broader theories about how social change in general happens. Therefore, we will consider several theories of general social change and explore whether they help analyze one ethnographic example of change in practice, drawn from NTD policymaking. We conclude that some philosophical thinking about the nature of change itself could help us develop a different perspective on theories of change that consider assumptions, happenstance, and emotional connections as integral elements, rather than contextual background, of social change.

The desire to understand how change happens is generally understood to be a defining feature of being human [55]. Anthropologists have long explored the multiple ways humans seek to make sense of the indeterminate and uncertain nature of life [56]. In fact, early anthropological explanations of social change as encapsulated in functionalist and structural-functionalist theories and diagrams of social organization were not entirely dissimilar in look to current Theory of Change models, with social change seen as occurring as an adaptive response to tension within a social system. However, contemporary anthropological theories of change draw on philosophies that are radically different and less mechanistic. We will now turn to two (complementary) theories to lay the theoretical backing and groundwork for proposing an alternative, more human-like perspectives on theories of change.

A compelling approach to social change derived from the work of philosophers that has gained some traction within anthropology in recent years uses the metaphor of rhizome [57]. In botany, a rhizome is a continuously growing horizontal underground stem which puts out both lateral shoots and adventitious roots at intervals, as illustrated in Fig. 3 below.

Fig. 3.

A. racemosa rhizome and roots. Reproduced from Bulletin of the Lloyd Library #30. By Lloyd, J.U & Lloyd, C.G. Cincinatti, OH 1931

Rhizome is a philosophical term, or a theory of knowledge, used to describe the relations and connectivity of things, whereby growth is multiple and does not come from a single central point of origin. It is held in contrast to tree metaphors, that posit single origins and predictable upwards growth. Anthropologists have productively used this philosophical metaphor to better describe ethnographic accounts of change in specific contexts. For example, in an ethnographic study of the development of the clinical trials sector in Sri Lanka, Sariola and Simpson argue that collaborations between stakeholders occurs in ways which were irregular, continuous and surprising, rather than following a programmatic script [58]. One example of rhizomic growth, for instance, is how in a Joint Pain Trial, the initiating Sri Lankan clinicians carefully courted specific collaborators as part of their longer-term vision for developing expertise in clinical trials in genetic disorders which would directly help their patients. In this way, the trial afforded not only infrastructural development but what Sariola and Simpson call ‘second-order development.’ In a traditional Theory of Change model there would have been no place for such a surprising ‘off-shoot’ occurring, because only planned interventions and expected outcomes are included in the diagrams.

The rhizome has been used as ‘thought-aid’ in a number of other diverse circumstances [59]. Paleker, for example, uses the concept of ‘rhizomatic thinking’ as a useful conceptual framework for charting the global spread of turmeric and turmeric discourses, enabling them to link the cosmic wellness discourse, with Vedic culture as the older rhizome which has sprouted multiple global off-shoots that have retained some link with Vedic culture [60]. And anthropologist Emily Martin productively uses the metaphor to avoid assuming a one-way linkage in which scientific knowledge flows from a scientific citadel outwards to ‘culture’ [61]. In her study of the Immune System, this way of thinking allows her to bring together a seemingly diverse group of ethnographic fieldsites such an immunology lab, various clinical HIV settings, AIDS activist volunteer organizations, several urban neighborhoods, and corporate workplaces in order to fully understand changing ideas about health and immunity in the United States since the 1940s [62].

One aspect of the quality of social change that rhizome theory promotes is the capacity of the old and new to exist simultaneously, with no contradiction. This speaks to another influential philosophical approach that may also be useful to a reconceptualization of Theory of Change models, this time drawn from African ontological philosophy. The philosopher Mbembe has characterised the processes of transition and change in postcolonial Africa in his book ‘On the Postcolony’ [63]. Change, he argues, does not move ‘in a closed orbit’ but rather points in several directions at once, and simultaneously occurs at different speeds, on different time scales. Instead, he describes a social context of ‘entanglement’ where life is lived with reference to multiple historical reference-points at once. Importantly, this is not experienced as chaos, nor as without order, but does include multiple reversals and swings of fortune:

As an age the post colony encloses multiple durées made up of discontinuities, reversals, inertia and swings that overlay one another, interpenetrate one another and envelope one another, an entanglement (63 p. 14).

Such a conceptualization stands in contrast to Theory of Change models with their overwhelmingly unidirectional arrows and stages of ordered forward progression. An example of entanglement in concrete form is shown in ethnographic research on transnational medical research in rural Western Kenya where the multiple ‘ages’ of intervention (colonial, missionary, global health research) were demonstrably present in the current architecture of a health dispensary, which contained the original mud thatched building of the first dispensary, alongside brick-built buildings from development projects and the modern shipping container clinic of a transnational medical research project [64].

Finally, anthropology as a thoroughly holistic discipline allows for the incorporation of both individual biography and social structure, as well as a consideration of things like feeling and emotion, aspects sometimes considered too amorphous to be analyzed [65, 66]. However, this paper will argue that such things can and should be included in Theory of Change, if such models are to encapsulate the humanness of change and represent how it actually occurs.

What these theories of social change all have in common is the idea that, although change can be linear, culminative and predictable, it is also moves in ways that are multi-directional, haphazard, and surprising. We will now use an illustrative case study from ethnographic research on the perspectives of stakeholders engaged in trying to influence high-level NTD policymaking to show what this can look like in practice.

Methodology

The piece of anthropological research that informs this case study took place between 2021 and 2023 as part of the NIHR-funded Social Sciences for Severe Stigmatizing Skin Diseases research programme. The research was conducted in accordance with the key ethical principles enshrined in the Declaration of Helsinki. Ethical clearance for this piece of research was obtained from the Research Governance and Ethics Committee of Brighton and Sussex Medical School. All study participants were adults. For interviews and focus group discussions, they provided informed consent in audio-recorded verbal form after reading an information sheet and consent form. Gatekeeper permission was obtained for observations at conferences and meetings. In presenting the findings, most people’s names, and in some cases, some surrounding contextual information, have been changed to maintain a degree of anonymity in accordance with the approved research protocol.

The focus of the research was on policymaking practices related to three NTDs that affect the skin: scabies, mycetoma and podoconiosis, as experienced in the UK, Sudan, Ethiopia, and Rwanda and international policymaking spaces like the World Health Organisation. Although disease listing was not an initial analytical focus, it emerged as a recurrent concern across interviews and observations and became a central site through which participants articulated their practical experiences of policy change.

We sought, therefore, to explore different perspectives about the attempts disease advocates made to get their disease on to the WHO list. We focused on personal stories, concrete stories of change, and perspectives on how it happened/happens. Methods included analysis of policy documents and grey literature, in-depth interviews (29 participants), as well as more informal conversations and ethnographic observations of online and in-person events such as NTD related seminars and workshops, including in-person observations of four major events related to NTD policymaking. These were a major WHO meeting, a non-governmental organizations conference, two annual general research projects meetings, and a UK political party conference. Research participants included global health researchers, NTD non-governmental organization employees, government workers and people working for/with international policy-making bodies. Participants included people from the UK, Australia, Rwanda, Sudan, Ethiopia and the Netherlands. Data was analyzed holistically across the whole dataset (interview transcripts, observation notes and documents), tracing the interweaving of individual narrative threads of stories of change, as well as looking at bigger common themes.

As anthropologists embedded in NTD research spaces, we were attentive to how our positionality shaped data collection and analysis. Our familiarity with some participants facilitated trust and openness, while we remained reflexive about potential biases in interpreting advocacy narratives.

A note on analytic framing

The act of getting a NTD onto the WHO list is the kind of clear ‘big’ vision or goal that typically guides Theory of Change models. However, those involved in this activity did not, to our knowledge, plan their interventions and actions using a specific Theory of Change model. The stories described below, therefore, are accounts of organic change. Therefore, as part of ethnographically analyzing these accounts, we have tried to think about what an actual theory of a policy change that has already happened would have looked like, imagining the kind of diagram that would have best encapsulated it.

Findings

Drawing on narratives and observations, this section presents the main themes that emerged from participants’ accounts of advocacy.

Theme 1: Disease listing as a focal point for policy momentum

Across interviews and discussions, participants consistently framed inclusion on the WHO NTD list as a crucial first step in enabling policy change [67]. Being listed was widely understood as conferring legitimacy and visibility, particularly in relation to funding and national uptake. As one participant explained, listing helped to ‘open doors [to funding] that would otherwise remain closed.’ Others described inclusion as signalling that ‘countries now accept it [the disease] as a problem’, or as a mechanism to ‘focus minds [which] trickles down to national health services.’

Theme 2: Oil spill metaphor

Our second theme centres on the metaphor of an ‘oil spill,’ which vividly captures many participants experience of policy change as diffuse, opportunistic, and spreading in multiple directions. Underpinning this metaphor is a broader finding from our research which found that, in general, people are not exactly certain of how change happens. A recurrent theme was the need to keep trying multiple things, seizing every opportunity, as you ‘could never be sure which one will work’. Another recurrent theme was that this was, above all, a slow process: ‘it’s like a very slow, constant nagging process…’.

Participants in a focus group discussion who had worked together to get mycetoma onto the WHO NTD list were the ones who came up with the vivid metaphor that represented their collective experience of trying to effect policy change, explaining: ‘it’s like an oil spill – where you get give, you go’ (Samantha Bolton, Communications expert), They described how they ‘moved’ into the policy spaces that allowed them in, trying multiple things until they ‘got give’, and then how this opened up more and more spaces for them to influence. They continued on to give an example of how one invite to a meeting might lead to a causal conversation with an attendee, which leads to another meeting where you present your research, leading to another chance to join an influential working group, and so on and so on. This description chimed with others who used comparable metaphors such as: ‘it’s like pushing on a door as soon as it opens you have to shove your foot in it and do whatever it takes to get yourself through’.

We found the mycetoma advocates evocative description of an ‘oil spill’ effect especially compelling because seems to encapsulate what many participants alluded to: a relentless effort towards finding ways through, moving in the directions that allowed you, changing course when needed, but – above all – keeping moving somewhere and spreading out. This metaphor speaks to rhizome theory in some ways, with the idea of change happening in many, irregular directions at once (or ‘shoots’). However, it also evokes something additional. The movement of an oil spill invariably marks, often irrevocably, the landscape through which it travels. The same could be said for some of the efforts towards effecting change made by our participants. When looking back on over a decade’s worth of mycetoma advocacy, participants described how their ‘slow nagging’ had, eventually, significantly changed the policy landscape in which they now found themselves working. Their environment had changed to the extent that it only now required small pushes to ‘spill more oil’. For example, during a landmark WHO global meeting on Skin-NTDs, they had decided it would be an excellent high-profile platform to formally award one of the leading mycetoma researchers a prize. Whereas several years ago, this would have been difficult (and involving much ‘slow nagging’), during this meeting they were able to make this happen through a quick WhatsApp to one of the organizers, such is the now-significance of mycetoma and the profile of its advocates. The ‘oil spill’ of mycetoma advocacy also changed the landscape in which advocates for other diseases found themselves operating. Once mycetoma had been successfully added to the WHO list, this (according to several of our participants) ‘paved the way’ for the inclusion of other diseases, not least through the creation of a formal mechanism by which to do so.

Theme 3: Emotion and personal biography

The metaphor of oil spilling also highlights another aspect of change: the importance of the personal determinedness and emotional lives and motivations of those advocating for it. Oil spills move in ways that seem slow but are also dogged or relentless. This resonates with many of the life stories and personal biographies of those we interviewed. Individuals often started work in their field at a point when the disease they were either researching or advocating for were particularly neglected, with the act of taking this problem on becoming a life-long cause. In this way both the personal qualities of individuals and their personal biographies intersect with the stories of policy change. In fact, a perhaps surprising finding was how often participants perceived specific individuals as instrumenting in effecting change: Being with X and her relentless enthusiasm for all things scabies, I now have that too!’ and ‘it is individuals, individuals, individuals, that make change!’. Whether this is because it was easy for participants to ‘see’ the roles of individuals as opposed to social structures is unclear. But what is clear is that individual biographies were often intimately folded into the stories participants told. For example, a key mycetoma researcher whose efforts were central in providing the high impact evidence needed for lobbying, describes how her career trajectory as a scientist intertwined with the need for policy change. To guarantee her career as a scientist working on a topic that fascinated her, she needed to make sure it was recognized as a priority disease within global policy and so make it possible to gain funding to continue her scientific research.

In addition to relentlessness, another aspect of feeling that emerged as important in the perspective of participants was love. In the words of Ethiopian global health policy expert, Teshome Gebre,:

Love is the most powerful driving force for policy making, for people to take issues to the highest level of policy-making [because] as a human being when you see some of those things first-hand you cannot really tolerate them.

Love was referenced in relation to both ‘big’ and small/personal emotions. Teshome quoted above described the visit of US President Carter to a village in Ghana where nearly everyone was infected by guinea worm as a pivotal moment of global change in NTD advocacy, leading Carter to take on guinea worm as a personal mission. But on a smaller scale, many of our participants described having first-hand, intense moments of empathy with those suffering, which became instrumental in motivating them to continue their work, even when progress seemed slow. Memories of such moments returned to them when things seemed hard (See also [68]). Such emotional drivers of change are rarely incorporated into Theory of Change models.

Theme 4: Happenstance and serendipity

The fourth theme underscores the unexpected role of chance events. Serendipitous encounters and unplanned opportunities often proved pivotal in shaping advocacy trajectories. Happenstance refers to events that happen more by chance than design or specific planning.

Our research is full of examples of moments of happenstance being instrumental in effecting change.

For example, after the creation of the initial WHO NTD list in 2006, it was not clear as to how other NTDs could be added. That is, until advocates for mycetoma managed to successfully lobby for the inclusion of their disease in a rather haphazard way, which prompted the WHO to then set up a more formal system of application and open this up to other potential NTDs. One of our participants argues that ‘in many ways’ the route to become an NTD ‘was paved by mycetoma.’ Mycetoma’s advocates had been lobbying the WHO for a long time to add Mycetoma to its NTD list. It is inclusion in May 2016 as the 18th WHO disease is an interesting story because it highlights the importance of both individuals, emotions and happenstance.

The Mycetoma Research Centre in Sudan was established in 2015 as a WHO Referral Centre for Mycetoma and had close links with staff at the WHO department for NTDs and the Drugs for Neglected Diseases Initiative (DNDI). But its’ Director desperately wanted Mycetoma to also have formal recognition as a WHO NTD. A first consultation meeting on ‘Mycetoma: why is it still neglected?’ was held in Geneva in February 2013 under the auspices of the DNDI to think about, among other things, how to get mycetoma recognised. As there was no technical mechanism or formal policy route for this, they took a direct approach. For several years in a row, the Mycetoma Research Centre’s Director held side-events at the annual World Health Assemblies in Geneva about mycetoma. But very few people came. The Director, the Sudanese representative and perhaps one other person in the room. However, in 2015 at the 67th World Health Assembly two students from the University of Toronto ‘happened’ to turn up to the side meeting. One was doing a master’s degree in public health, the other was a third-year undergraduate studying molecular genetics and microbiology. They were both doing internships at WHO for their studies.

They decided to nominate the disease for the 2015 Global Health Untold Stories Contest, a writing competition run by the Consortium of Universities for Global Health and Johns Hopkins Bloomberg School of Public Health. They based their story pitch on the image of an empty room which had touched them at a deep emotional level:

One of my most haunting memories from WHA67 was the disappointment on the faces of the African health ministers when faced with an empty side event room, and the rows of mycetoma briefing papers laid hopefully on tabletops that went untouched[69]

As a result of the students’ nomination for the writing competition, a freelance science journalist was commissioned by Global Health NOW to visit Sudan and write a series of stories on mycetoma. She ended up writing more than her three commissioned stories, and in fact followed the case of mycetoma until after it was formally added to the NTD list at the next World Health Assembly in May 2016. Her pieces were picked up in the global press, far beyond the Global Health Now website. One of the mycetoma researchers and advocates argues that, in their analysis, the happenstance of the students turning up to the empty room, winning the writing competition, and the journalist selected to produce the story being so personally affected by mycetoma sufferers was the real driver of change for mycetoma, recounting how many more people then showed up to the next side event.

The journalist covered the 2015/2016 discussions at the WHO on mycetoma’s inclusion. The story she produced about this argued that this lobbying activity ‘may change the way the WHO does business’:

‘In January [at the WHO’s Executive Board meeting] Sudan, Egypt, Jordan, Canada, and several other countries asked the WHO to add mycetoma to their list of diseases that afflict the poor. It seemed that the WHO Executive Board would oblige, until U.S. representatives complained about the addition on principle. “The problem,” explains Jimmy Kolker, assistant secretary for Global Affairs at the US Department of Health and Human Services, “is that the WHO has no mechanism for deciding what deserves to be on their list.” In response to the US, the WHO’s neglected disease department recently proposed an entirely new process for adding diseases to the list—one that the head of the department, Dirk Engels, hopes will decrease political jostling. Rather than rely on pressure from countries for or against additions, such as mycetoma, delegates would submit their disease of choice to a WHO technical committee that evaluates the candidate based on evidence. Today, when the suggestion of adding mycetoma to the list comes up at the Assembly, delegates will simultaneously consider the new process.’ [70].

From this point on, a Strategic Technical Advisory Group was created to which interested parties, through a member state, could submit a dossier of evidence, following clear instructions. This was seen as a key moment by advocates of other diseases like scabies. In the words of one of our participants: Because having got those new criteria, there was an opening for others to submit dossiers for the inclusion of the diseases they advocated.’

Another nice example of the power of happenstance in change is taken from an interview with a participant who was involved in trying to get scabies recognized as an NTD. He describes how scabies surprisingly and temporarily got listed by thein 2012.

I just phoned them [the WHO] up in Geneva. And I think most people were on holiday. Because the person who picked up the phone happened to be the Director of the NTD programme [laughter] who knew about scabies from living in a village on an island where it was a problem. So, he said, ‘we’ll help you.’ We [the researcher and two others interested in this] quickly drafted something about scabies and the Director put it up on the WHO website as an NTD. It appeared in 2012.

In this case, this lucky instance of happenstance was soon superseded by the kind of reversal noted in Mbembe’s theorizing on the nature of change, and a reminder that gains made may also be superseded by losses.

But then I remember having a meeting two or three years later in Washington with the International Alliance for the Control of Scabies and suddenly we noticed that scabies had disappeared from WHO’s NTD list on their website. There was a new director and obviously they decided that several diseases should be taken off. We were devasted.

Another example, which shows both the oil spill effect, the unfolding of personal biography and happenstance intertwine in stories of change also relates to scabies advocacy. After mycetoma gained its inclusion on the list in a haphazard way, the new rules meant that advocates now needed to prepare a dossier of evidence to show that their disease was a significant problem, but one amenable to control, and one which several countries wanted solved. However, despite this seemingly more procedural route to change, happenstance still played a major role in shaping how groups of advocates came together. This is illustrated by the story of a young PhD student, Michael Marks, who was doing research in the Solomon Islands on a different NTD, which was already listed.

I was living in the Solomon Islands, doing PhD research on Yaws with some American CDC collaborators. And I was chatting with one of the people I knew at the CDC and said they told me oh I am going to this International Alliance for the Control of Scabies meeting. They do lots of work in the Pacific, you should come along. So, I went, and I got chatting to Andrew. I said, so my PhD involves going around examining the skin of lots of people in the Solomon Islands to see if they have got yaws. Why don’t we just examine them for scabies at the same time? You are saying there’s loads of scabies in Fiji, it cannot be that different in the Solomon Islands…. It was an easy win for me, as a first year PhD student to do this, and Andrew was really nice, one of the nicest people you will ever meet.

As a result of this casual conversation, Michael did end up doing this. Then, another ‘easy win’ emerged. There had been historic study on the control of scabies using ivermectin in 2005 in the Solomon Islands. It was, therefore, easy for him to go back to those communities and see the prevalence now. An additional ‘easy win’ for more scabies research was that a programme for the elimination of trachoma was going on in the island. Nine of the provinces had received mass drug administration. One was remaining. At the same meeting, another researcher happened to be there who was ‘a Trachoma person’:

So, we had a trachoma person, a mass drug administration person and me who lived there in the Solomon Islands, all of us in a corner at this meeting and we thought if you are going to do mass drug administration for trachoma why don’t we do it scabies at the same time?

Michael went back and spoke to the Public Health Officer for the Ministry of Health (‘it’s a tiny country, you can just go and do that’) who was keen: ‘I remember what he is actually said, X now you’re working on scabies, unlike yaws, that’s a disease that you know we’re really interested in.’

They got funding for this from the International Coalition for Trachoma Control, who were interesting in building platforms for the mass administration of multiple drugs, so that they could piggyback on neglected disease programmes running in areas they were not yet working. A potential issue with this was the safety of administering multiple drugs at once, which is why they were interested in funding a scabies mass drug administration trial. The Trachoma Coalition provided most of the funding, Michael used some of their PhD money for follow-up surveys, and the Ministry of Health paid for one round of drug administration. They were also lucky because the Permanent Secretary for the Solomon Islands was really dedicated to improving public health of his people and was passionate about scabies. They found a local PhD student to run the project. So, it was mutually beneficial for everyone.

In this way, we can see the oil spill effect of how a small conversation ‘in a corner’ at a meeting Michael was invited to by a collaborator and ‘happened’ to go along to as an PhD student eager to expand his networks, consequentially turns out to be very important in the story of scabies becoming an NTD because the Solomon Islands later becomes one of the three countries that provided a letter of support to help get scabies on the WHO NTD list. ‘Community’ or collegiality is also central to this story (‘the nicest people you will ever meet’).

These series of connections also led to the Solomon Islands being chosen, alongside Fiji, as one of the targets for a programme, funded by an Australian bank, called the World Scabies Program. The programme is run by Andrew Steer, the former chair of the International Alliance for the Control of Scabies - the first-person Michael met at that first meeting - and consists of a plan to give mass drug administration of ivermectin to the whole country twice. This programme began in June 2022 and is seen by alliance members as ‘absolutely connected’ to the inclusion of scabies on the NTD list. The jump up from where they started to the current situation is significant:

When I tell the scabies story, the next step is securing 10 million dollars.

IIn contrast, however, those working on mycetoma, the first of the forgotten NTDs to be listed, now find themselves in a much less fortunate situation. The 2023 war between the Sudanese Armed Forces and the paramilitary Rapid Support Forces in Sudan led to the physical destruction of the WHO Collaborating Centre on Mycetoma and the displacement of key researchers and advocates. For individuals and communities affected by mycetoma within Sudan, the consequences of this conflict are likely to be devastating, with impacts on care, surveillance, and outcomes that remain largely unknown. At the same time, and without minimising these losses, the disruption does not appear to have resulted in a simple rupture or wholesale reversal of change at the global level. Instead, it may have reconfigured the field in more dispersed ways, as research activity has shifted away from a single national institutional centre and reassembled through multiple, partially connected nodes. One concrete manifestation of this has been the successful completion of a nationwide community-based mapping study of mycetoma and other skin NTDs in Ethiopia, led by several Ethiopian universities with support from the Drugs for Neglected Diseases initiative. Mapping studies, however partial, are important for policy advocacy because they translate local disease experience into forms of evidence more likely to recognised and accepted in policymaking. In parallel, displaced researchers have continued to contribute to knowledge production, advocacy, and drug development through transnational collaborations. Taken together, these developments suggest the possibility of a more distributed mode of organisation shaping future efforts on mycetoma, even as the human cost of conflict in Sudan remains profound. It remains to be seen, therefore, how such turbulent social change will ultimately condition the gains made since the inclusion of mycetoma on the WHO NTD list.

Summary

When reflecting on these stories of efforts towards achieving policy change, it is hard to see how they would be accurately captured within the causal, step by step inputs/outputs diagrams usually produced in Theory of Change diagrams. The movement of change seems to better be depicted as rhizomic growth, with multiple offshoots together combining/adding up something new, with some of the forward (and backward) twists and turns occurring due to opportunistic happenstance as much as planning and underscored by the personal biographies and determination of those involved.

The painting below (Fig. 4) provides a visual illustration inspired by our ethnographic fieldwork, reflecting patterns that emerged from participants’ accounts of how planned, unidirectional change dissolves in practice, moving in multiple directions and unfolding, in the words of one participant, “like an oil spill.” Its title is intended in a tongue-in-cheek manner, underscoring the gap between the neatness of planned representations and the messier realities described by participants. The image invites reflection on the contingent nature of change, including disasters, relationships, community dynamics, love, chance encounters, and happenstance, and on how even scientific evidence itself is contingent and shaped by these dynamics.

Fig. 4.

Change happens like an oil spill’. Gemma Aellah and Johnson Ondiek, 2023

Discussion

In light of these findings, our discussion synthesizes key insights and explores their implications for future Theory of Change practices and NTD policymaking. Sustained and systematic thinking about how change occurs is clearly important in the formation of NTD research and intervention projects, especially given the increasingly limited resources available to tackle the problem. This paper does not, therefore, advocate against the use of Theory of Change models, which are now much more widely utlised than when the advocates whose stories we collected started their work. However, their stories and experiences do indicate that the traditional visual representations of pathways to change produced by Theory of Change models may not fully capture the intricacies of change. Rather, change often happens in ways more akin to rhizome growth or in the words of our research participants, like an oil-spill. Additionally, change involves emotions, individual biographies community, and happenstance, as well as evidence and planning. What the metaphors of the rhizome, or the oil-spill, capture is that emotional connections, individual biographies, happenstance and serendipity are integral elements of social change (in addition to evidence, institutions and planning). It is important to recognise these as integral, rather than background/context elements, for several reasons. Firstly, it more accurately reflects the lived reality of practitioners and could therefore make change ‘planning’ feel more relatable, genuine and engaging, offsetting some of complaints raised about Theory of Change creation feeling overly ‘mechanistic’. Secondly, recognising elements such as happenstance, emotional connections and individual biographies as integral to policy change may open up new spaces and opportunities for influencing change. Thirdly, it may encourage people to recognise and value creativity in finding new paths and outcomes when things go wrong.

Taking this into account, what then would a more human-like, anthropologically and philosophically informed Theory of Change actually look like? Such a perspective doesn’t lend itself well to diagrammatic form - the usual output - as it is, by definition, complex and dynamic, and better captured in the metaphors of oil spill or rhizome. However, given that the fundamental purpose of Theory of Change is to support planning, and diagrams are such a well-established practice, we have considered some ways that happenstance, emotional connects and individual biographies could be mobilised in a way that aids people who want to create change using such an approach. Takeaways are summarized in Box 1.

Implications for Theory of Change (ToC) Practice
Rethinking how ToC tools are used in NTD policy and advocacy
• Reinforce Treating ToC as a living document, revisited and revised as change unfolds • Create space for emergence and happenstance, including unplanned events and opportunities • Allow for bidirectionality and reversal, rather than assuming linear progress • Make individuals and relationships visible as agents and amplifiers of change • Recognise emotion (e.g. care, frustration, love) as a driver of action • Use reflexive prompts to revisit assumptions and assess what mattered in practice • Prioritise principles over fixed pathways, enabling adaptation across contexts

Firstly, such a Theory of Change would account for the oil spill effect – the notion that change pushes through in ways that might be multiple and surprising (‘where there is give that we where we go’). In diagrammatic form, rather than boxes connected by mostly forward-facing arrows, this might mean visualizing multiple potential pressure-points through which changes might flow. It would also mean creating space for possible reversals. For example, in the case of mycetoma’s progress, the 2023 civil war in Sudan has produced an abrupt and significant reversal, with the destruction of the WHO’s referral Centre for Mycetoma, but it has also produced rhizomic growth. A living Theory of Change diagram in this specific case may therefore involve tracing other possible and creative routes to change.

Such a diagram would also account for greater incorporation of the role of individuals and their personal biographies, as well as leaving space for feelings, emotions and creating a sense of community. In relation to NTD activity, this is likely to involve finding better and increased ways to provide opportunities to connect those involved in policymaking with those with lived experience of diseases.

Finally, how to account for the productive power of happenstance, something which is difficult to predict? In this regard, this could mean including activities and plans that do not have a predicted specific causal pathway to an outcome mapped out. Vitally it would also mean making an even greater commitment to the idea that a Theory of Change model should be continuously reviewed and re-visualized as unexpected events occur and ideas about change themselves change. Although continuous review is suggested in Theory of Change guidance, this is not always done.

For policymakers and advocates, this alternative Theory of Change suggests the value of building flexibility into planning processes — not only mapping desired pathways, but also anticipating reversals, fostering relationships, and remaining open to unplanned opportunities. Integrating human emotion, biography, and happenstance into strategy design could enhance responsiveness to the unpredictable dynamics of global health policymaking. Reframing underlying assumptions about change so as to understand it as multidirectional and emergent may inform more agile advocacy strategies across global health challenges beyond NTDs.

Can this be diagrammed?

A central question raised by this analysis is whether forms of policy change characterised by emotion, individual biography, slow and persistent effort, and moments of happenstance can be meaningfully represented through diagrams at all. Conventional Theory of Change diagrams tend to privilege linearity, predictability, and closure, often obscuring the relational and contingent dynamics that participants described as central to NTD policy change in practice. Rather than proposing a single alternative diagram, we offer two complementary visual tools that are intended to be used together, each serving a different but related purpose.

Layered theory of change: where change operates

The layered Theory of Change visual tool presented in Fig. 5 above is intended as a practical, reflexive tool for understanding where change is operating at a given moment. Rather than mapping a sequence of steps from intervention to outcome, it draws attention to the different domains through which policy change unfolds, including structural context, individuals and relationships, emotion and motivation, formal policy processes, and moments of happenstance or reversal. In practice, this diagram could be used in meetings or reviews to structure discussion around a set of concrete questions: which layers are currently most influential, where effort and energy are being concentrated, and where constraints or vulnerabilities lie. Making these layers explicit can help teams decide where to focus attention next—for example, whether progress depends on continued slow and persistent advocacy, investment in relationships, responsiveness to an emerging opportunity, or waiting out a constraining context—without assuming linear progress.

Fig. 5.

Layered Theory of Change: where change operates. Visual tool produced by authors, 2026

Relational theory of change: how change moves

Our relational Theory of Change visual tool presented in Fig. 6. complements this by offering a way of understanding how change moves between layers in non-linear and often unpredictable ways. Rather than functioning as a planning tool, it serves as a sense-making device that highlights the role of relationships, emotional investment, individual biography, and chance encounters in shaping policy trajectories. Its clustered form and areas of blank space are intentional, reflecting participants’ accounts of spill-over effects, periods of waiting, stalled momentum, and sudden shifts in direction that could not have been anticipated in advance. Used retrospectively or alongside ongoing work, the diagram helps explain why change frequently deviates from plan and legitimises adaptation, course correction, and responsiveness to context as integral to policy change in practice.

Fig. 6.

Relational Theory of Change: how change operates. Visual tool produced by authors, 2026

Read together, these diagrams illustrate both the possibilities and limits of diagramming change. The layered Theory of Change tool provides a usable structure for reflection and adaptive decision-making, while the relational Theory of Change tool keeps open a space for emergence, uncertainty, and surprise. In combination, they suggest that diagramming is most useful not as a means of fixing change into predefined pathways, but as a way of supporting ongoing sense-making in complex, emotionally charged, and contingent policy environments.

Conclusions

This paper contributes to both theory and practice in several ways. Conceptually, it extends conventional Theory of Change conceptualisations by integrating anthropological perspectives, notably rhizome theory and African ontological philosophy, to better capture the multidirectional, emergent, and emotionally charged nature of policymaking. Practically, it offers advocates and policymakers parameters for devising new frameworks that emphasizes flexibility, the strategic value of personal narratives, and responsiveness to unexpected opportunities — features often overlooked in linear planning tools. By recognizing the role of happenstance and human relationships in driving policy shifts, models that incorporate such elements would encourage more adaptive approaches to advocacy, particularly in contexts of limited resources and political uncertainty. Finally, this reconceptualization opens avenues for future research into how similar dynamics operate in other areas of global health and development policy, where complexity and unpredictability are likewise central challenges.

Author contributions

This paper is a result of GA’s post-doctoral project. GA conducted the research and drafted the manuscript. SZ and AMR provided mentorship throughout. All authors were involved in research conceptualization and all authors reviewed the manuscript.

Funding

This research was funded by the NIHR 5S Foundation held by Brighton and Sussex Medical School (200140) using UK aid from the UK Government to support global health research.

Data availability

This paper uses qualitative data drawn from confidential observations, interviews and focus group discussions. In accordance with the ethics protocols governing the project, this raw data is stored in a secure repository at the University of Sussex and cannot be shared beyond the research team.

Declarations

Ethics approval and consent to participate

The research was conducted in accordance with the key ethical principles enshrined in the Declaration of Helsinki. Ethical clearance for this piece of research was obtained from the Research Governance and Ethics Committee of Brighton and Sussex Medical School (RGEC). All study participants were adults. For interviews and focus group discussions, they provided informed consent in audio-recorded verbal form after reading an information sheet and consent form. Some names of study participants mentioned are pseudonyms, and some surrounding contextual information is changed to preserve a degree of anonymity. Gatekeeper permission was obtained for observations at conferences and meetings.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.