A case study from Guyana of adapting engaged research design to promote ‘fairness in knowing’

Introduction

The politics of knowledge production is complex, multidimensional and often contested (Nowotny et al., 2003). This is not a new phenomenon. Researchers have explored the changing epistemological conditions of knowledge production (influencing both the processes and products of research) over many years (Hall and Tandon, 2017; Facer and Pahl, 2017; Rasool, 2017; Tandon and Hall, 2014; Nowotny et al., 2003, 2001; Gibbons et al., 1994). In this paper, we explore an example of these changing epistemological conditions in the form of a case study that addresses a huge health issue in the Global South: malaria. In so doing, we combine ideas drawn from philosophy (‘epistemic injustice’; Fricker, 2007), critical theory (‘epistemicide’; de Sousa Santos, 2007, 2018) and practical approaches (‘engaged research design’; Holliman et al., 2017) with Indigenous knowledge to promote ‘fairness in knowing’ (Medvecky, 2018).

Engaged research design

In delivering a previous institution-wide culture change project (Holliman et al., 2015), researchers at the Open University, UK co-produced two key interventions that informed the planning and management of the DETECT (Integrated Space Technology Vector Control for Enhancing community health and resilience against escalating climatic disruptions) project. These were: (1) a definition of engaged research (Grand et al., 2015); and (2) an engaged research design framework to inform pre-award planning, project management and evaluation (Holliman et al., 2017, 2015).

In reviewing findings from surveys of staff and qualitative interviews with researcher leaders across the university, we identified a lack of shared tools of interpretation in how engagement was conceptualised across different academic disciplines and domains (Grand et al., 2015). To address this challenge, we co-produced a definition of engaged research, and secured approval from the University’s Research Committee and Senate to adopt this as an institutionally agreed position: ‘Engaged research encompasses the different ways that researchers meaningfully interact with various stakeholders over any or all stages of a research process, from issue formulation, the production or co-creation of new knowledge, to knowledge evaluation and dissemination’ (Grand et al., 2015: 14). In a qualifying statement to this definition, the authors argued that the involvement of stakeholders, user communities, members of the public and/or communities who come into existence or develop an identity in relationship to the research process should be explored strategically to consider questions of representation, utility and emergence (Mahony and Stephansen, 2017; Mahony, 2015).

Notably, the definition is deliberately generic and pragmatic. It applies to research conducted in any discipline. In seeking to apply this across all disciplines and domains at a university with a highly diverse research portfolio, the definition also draws on theoretical conceptualisations of engagement that do not assume a normative position of how engaged stakeholders should be in the context of a given research project (Irwin, 2008). As Morgan (2014: 1051) argues, ‘Pragmatism shifts the study of social research to questions such as: How do researchers make choices about the way they do research? Why do they make the choices they do? And, what is the impact of making one set of choices rather than another?’

An obvious question follows from this approach in the context of engaged research: How can researchers and publics be supported in making decisions about the framing, contributors, methodologies and methods, outputs and so on from engaged research? In seeking to inform these decision-making processes ‘upstream’ (Wilsdon and Willis, 2004), the definition of engaged research was complemented by a similarly pragmatic design framework to inform planning, project management and evaluation across all academic disciplines (Holliman et al., 2017).

The engaged research design framework acts as a series of prompts or questions (Figure 1). It is designed to assist upstream planning for engaged research through the exploration of a series of ‘dimensions’: preparedness, people, purposes, processes, politics, participation and performance. Here we offer a series of simple questions that can inform decision making about each dimension:

• Politics: Do all the constituencies involved understand the wider ‘political’ context for engaged research?

• Preparedness: Is there shared understanding about how to plan for, manage and reflect on the engaged research?

• People: Who are the ‘constituencies’ (publics, stakeholders, community groups, end-users, institutions and so on) who could engage? What forms of support, including financial payments, do constituencies need to be able to meaningfully engage?

• Purposes: What are the aims and objectives of the engaged research? What outputs or products could be delivered?

• Processes: How will the engaged research involve people, and when and how often will these constituencies be involved?

• Performance: What measures are proposed for exploring how wider constituencies participate in practice? Has the need to adapt to changing circumstances been considered? How will the learning be shared to improve future practice?

• Participation: What were the changes, effects and/or benefits for the constituencies? Were the Purposes met for everyone?

Figure 1.

The engaged research design framework (Source: Holliman et al., 2017)

We argue that actively involving different forms of expertise and experience in the design, management and reflective phases of engaged research requires flexibility. Those involved also need to be aware of, and to accept and welcome, the opportunity to work under bespoke epistemological conditions of increased indeterminacy. Put simply, if you agree to open the research process to wider constituencies, you should also accept that others bring forms of expertise and experience to those discussions, and that they should have influence over the direction and outputs of that research. In this paper, we explore how this process of opening research to the ‘unexpected’ must be underpinned by ethical considerations about what needs to be prioritised and for which purposes.

Fairness in knowing

In introducing the definition of engaged research, and the engaged research design framework, we have emphasised the underpinning pragmatism. Pragmatism obviously has its limitations. For example, the definition and framework lack an ethical dimension. This limitation is highlighted by Medvecky (2018: 1393) in the context of the decisions that science communicators can make:

whether science communicators acknowledge it or not, they get to decide both which knowledge is shared (by choosing which topic is communicated), and who gets access to this knowledge (by choosing which audience it is presented to). As a result, the decisions of science communicators have important implications for epistemic justice: how knowledge is distributed fairly and equitably.

Medvecky (2018) calls for researchers to (re)think how they communicate to promote ‘fairness in knowing’ in how, why, when and with whom they communicate. By doing so, he argues that they can help to counter ‘epistemic injustice’ (Fricker, 2007). Following this view, communication and collaborative science-making similarly need to account for inequalities built into the systems and channels of knowledge used to achieve their objectives.

Fricker (2007: 44) offers a definition of epistemic injustice when she argues that ‘there is a distinctively epistemic type of injustice, in which someone is wronged specifically in their capacity as a knower’.

Two key concepts underpin Fricker’s (2007) conceptualisation of epistemic injustice: testimonial and hermeneutical injustice. Testimonial injustice comes in two forms: credibility deficit, ‘owing to identity prejudice in the hearer’ (Fricker, 2007: 28); and credibility excess, ‘a speaker who is overly esteemed in her capacity as a knower’ (Davies, 2016: 486). The concept relates both to who is given a voice in engaged research, and to the forms of expertise and experience that are, or are not, routinely valued.

In applying these concepts to engaged research, we argue that they should relate both to those who routinely gain access to the processes of knowledge production and dissemination, therefore potentially experiencing credibility excess, and to those who experience deliberate and unconscious forms of exclusion from knowledge production and dissemination, therefore experiencing credibility deficit.

Hermeneutical injustice refers to a gap in our shared tools of interpretation (Fricker, 2007). In applying this concept to engaged research, it relates to whether and how parties to engaged research: (1) have encountered the issue(s) under consideration; (2) have any prior experience of processes of engagement; (3) have experience or desire to be involved in the production of outputs/products; and (4) have experience of working together under equitable conditions.

Put simply, have all the parties developed shared ways of engaging that are both meaningful and equitable?

Fricker (2007) argues that to understand and address issues of epistemic injustice, we should take account of the distribution of social power, placing this concept within broader patterns of social injustice.

We argue that, in applying Fricker’s (2007) and Medvecky’s (2018) philosophical concepts to engaged research in the context of communities that have experienced historical oppression, an ongoing lack of meaningful access to processes of knowledge production has, in part, perpetuated that oppression. Those planning engaged research should therefore seek to ‘flip’ the concept of epistemic injustice in practice to promote epistemic justice and ‘fairness in knowing’. It follows that there is a very practical application in drawing on these philosophical concepts. The ethical dimension of research discussed here is not about institutional governance or professional guidelines for research processes; rather, it is in dialogue with Fricker’s (2007) idea that there are distinctive forms of injustice that can be redressed by focusing on the ethics of knowing. As such, we are focusing on the accountability of researchers to different communities, and on other ways in which research is imbricated in asymmetric relations and historical injustice. (The DETECT project and the programmes with which it is associated, namely AstrobiologyOU, have developed a theoretically grounded ethical framework that highlights how ethical considerations need to be factored in decision making about the use of resources, ownership and use of data, as well as relationships within and outside the project team [Chimakonam, 2017; Ndlovu-Gatsheni, 2018; de Sousa Santos, 2018]. Considerations about relationships include explicit reference to power dynamics and addressing epistemic injustice, whenever possible.)

Combining Fricker’s (2007) conceptualisation of epistemic injustice with Medvecky’s (2018) ideas about ‘fairness in knowing’ adds an important ethical ‘lens’ to decisions made in relation to how engaged research is planned, who shapes and frames what will be studied, who routinely engages with knowledge production, and who consumes the outputs from research and in what forms. In effect, these decisions influence who routinely gets a voice in research and who is excluded, and how those voices are enabled to engage fairly and equitably. If we explore the dimension of engaged research design with an ethical lens, several key questions need to be added:

• Politics: What is the historical context for the engaged research? Are there constituencies who have suffered oppression and/or exclusion from the processes of knowledge production?

• Preparedness: How can researchers gain deep contextual understanding of the challenges of engaging with different histories, value systems and knowledges on equitable terms? Have all constituencies been given genuine opportunities to bring relevant expertise and experience to the table?

• People: Who are the constituencies (publics, stakeholders, community groups, end-users, institutions and so on) who should be represented? What forms of expertise and experience should be included? Is anyone routinely excluded? Are there opportunities for wider constituencies to join as new issues emerge?

• Purposes: Have the constituencies been consulted about what they would like the outcomes or products of the engaged research to be? What processes could be proposed for consulting with these constituencies about the purposes and outputs of the research?

• Processes: How will the engaged research or knowledge exchange involve wider constituencies in meaningful ways? Where and how will the constituencies meet? Do different constituencies need different ways to engage?

• Performance: What measures are proposed for exploring how the constituencies have participated? Has the need to adapt to changing circumstances been considered? Will the findings be shared in appropriate ways for different constituencies to improve future practice?

• Participation: Were the objectives met for everyone? Were genuine opportunities and support offered to share learning in ways that are meaningful to different constituencies? How did researchers ‘give back’ to the wider constituencies with which they engaged?

Our argument is that an ethical imperative should underpin conceptualisations of engaged research. It is paramount that those planning engaged research with historically oppressed communities critically interrogate the interplay between privilege and responsibility in relation to knowledge production (Raghuram et al., 2009; Jazeel and McFarlane, 2010). The Māori scholar Linda Tuhiwai Smith powerfully discusses the imperial legacies of Western knowledge, and points to the ways in which extractive methodologies continue to harm and exclude Indigenous communities (Smith, 2012). In striving for an Indigenous-led collaboration and engagement, we support foregrounding self-determination and sovereignty (Kukutai and Taylor, 2016). The DETECT project team includes Indigenous and non-Indigenous researchers. However, while the team carried out research with, not on Indigenous communities, we do not claim to enact decolonisation, which is understood by the authors as much more than just ‘a metaphor’ (Tuck and Yang, 2012).

As ‘knowledge is politics in other words’ (Jazeel and McFarlane, 2010: 110), our experience of collaborative practice suggests that when formulating a socio-technical, ethical and political intervention, one aim should be to reduce epistemic injustice and promote ‘fairness in knowing’. Decision making should be based primarily on ethical principles, only shifting from this position in extremis to adapt for pragmatic reasons. By applying the engaged research design framework with an ethical lens to upstream planning (also management and reflection), we argue that all parties to engaged research can benefit from more equitable ways of working, as well as shared tools of interpretation.

Transforming theory into planning: the case of DETECT

DETECT used the engaged research design framework to frame its pre-award planning and post-award management. We combined the ethos of engaged research with theoretical concepts and practical approaches that allow team members to acknowledge the ways in which ‘epistemic injustice’ determines different starting points for project participants, and to structure their project activities in a way to promote ‘fairness in knowing’.

Funded by the UK Space Agency, the DETECT project addresses a huge health issue in the Global South: malaria. The established international strategy for control of malaria is a top-down approach intended to break the transmission cycle (WHO, 2020). The strategy involves large-scale insecticide spraying, distribution of insecticide-treated bed nets draining bodies of water, or treating them with insecticide, and mass diagnosis and treatment of infected people.

This strategy has been successful in many countries; for example, in 2016 the World Health Organization (WHO) declared that malaria had been eradicated from Sri Lanka (WHO, 2016). However, these successes mask ineffective and regressive situations in other countries, and the WHO has recognised there is an urgent need for appropriate technologies, better surveillance and smarter approaches that are tailored to local contexts (WHO, 2020). DETECT sought community-driven technologies to further local communities’ interests without undermining their self-determination. The DETECT system is best summarised as a cost-effective community-based service. It uses satellite, drone and ground-based environmental data to identify, almost in real time and with a high spatial precision, where mosquitoes are breeding. The information derived from this equipment allows communities to deploy a ‘sprayer drone’ to high-risk areas to release biocontrol agents which kill the mosquito larvae without affecting other species.

Combining engaged research design with soft system methodology

Complex problems are rarely solved by a single intervention. DETECT built on the generic principles of engaged research design (Figure 1) through the use of soft system methodology (SSM), which ‘acknowledges the existence of a variety of stakeholders involved in any project, and their distinct interests, and how this might impact on the design of any system’ (Bannon and Ehn, 2012: 43). SSM was used to enhance participation of users and other stakeholders through a framework that aimed to resolve problems by assessing the overall situation, not just the specific technology challenge (Berardi et al., 2017). Our human-centred SSM design strategy (see Figure 2) invited the active participation of a wide range of stakeholders, including the local communities, domain specialists, technicians, decision makers, funders and project coordinators in engaged exercises that allowed the learning acquired in every step to be put into practice in the next phases of the project.

Figure 2.

Overview of DETECT’s use of soft system methodology (Source: authors)

Engaged research thus supported and fed into explicit consideration of social, economic, political and cultural issues which were fundamental determinants in the successful adoption of the system to be created at the end of the project.

In what follows, we offer a detailed description of how engaged research design and soft system methodology were combined to co-develop socio-technical solutions to address malaria, with Indigenous communities, commercial companies, research organisations and government agencies.

Processes

Exploring Processes requires those planning engaged research to consider practical and ethical questions about how to engage. What are the methodologies and methods that underpin the engagement, and when, and how often, will different stakeholders be involved in the research cycle? Where are these interventions likely to take place, and through what mechanisms (for example, in person and/or mediated via tools and technologies)?

In selecting methodologies and methods, those planning how to engage with stakeholders should explore which ‘order’ (or orders) of engagement (Irwin, 2008) an activity can support (Figure 3). It follows that activities can support different levels of interactivity and active participation, ranging from informing, through consultation, to collaboration and co-production.

Figure 3.

A typology of engagement activities, categorised by ‘order’ (Source: NCCPE/Wellcome Trust)

By ‘flipping’ Fricker’s (2007) concept to explore how hermeneutical justice can be supported, those planning engaged research add another lens: how will the research involve relevant stakeholders in meaningful and equitable ways, and how has everyone contributed to ensure the processes will work for them? We argue that, by ‘flipping’ Fricker’s (2007) philosophical concept in practice, those planning engaged research should actively seek ways of engaging that are culturally sensitive to different stakeholder groups.

DETECT required us to identify the Process(es) for the project (Figure 1), for example, through ‘pilot activities’ and the use of ‘co-produced tools’ (Figure 2). We sought to embed an ethos of inclusivity in all processes, from intention to structure and evaluation (the latter encompassing Participation and Performance).

DETECT used the ‘ladder of inclusive innovation’ to identify the many ways in which our processes of technology production could be (or could not be) inclusive (Heeks et al., 2014). The steps in the ladder require participants to account for:

• Intention – if the intention is to address the needs or wants of an excluded group

• Consumption – if it is adopted and used by the excluded group

• Impact – if it has a positive impact on the livelihoods of the excluded group

• Process – if the excluded group is involved in the development of the innovation

• Structure – if it is created within a structure that is itself inclusive

• Post-structure – if it is created within a frame of knowledge that is itself inclusive.

We fostered inclusion through the following activities:

1. Refine needs assessment: we conducted workshops and interviews with academics, community members, non-governmental organisation (NGO) workers and government officials.

2. Co-define the intended impacts and measurement frameworks: we planned to use the evidence cafe methodology (Clough and Adams, 2017), but due to COVID-19 restrictions we had to rely on other methods (from interviews to storytelling) to draw and refine our theory of change, and to enhance the participatory nature of stakeholders’ engagement.

3. Design and agree on the technological innovation to implement: (i) an expansion of the existing team with more expertise and new partnerships; (ii) use of an iterative agile prototyping methodology; and (iii) workshops to enable participants to feed back on the plans for technology development.

4. Monitor/check processes against objectives: create monitoring and evaluation tools by foregrounding user needs and knowledges to monitor indicators underpinning the achievement of the project objectives.

5. Evaluate and learn from feedback: evaluating after every activity, taking stock of the responses received from consultations and data arising from the use of participatory methods, including workshops and participatory videos.

Conclusion

In this paper, we have reported a detailed process account of DETECT, a project that used an engaged research design to create a socio-technical system to empower Indigenous communities’ mitigation of malaria in Guyana. We combined an ethos of engaged research with theoretical concepts and practical approaches to promote ‘fairness in knowing’ and reduce ‘epistemic injustice’. We have shown how we embedded ethics in the context of cross-cultural engagement, aligned with systems thinking, to develop a principled approach to engaged research design. We were forced to review and revise plans following the emergence of COVID-19 and the introduction of restrictions, but in so doing, prioritised local communities’ self-determination when addressing the conditions that give rise to malaria (and other issues, including biodiversity conservation, flood management and mental health). As a result of what we have learnt together through this work, we argue that engaged research involving historically oppressed communities requires long-term planning, support and a high degree of responsiveness to local demands for action and accountability.

We have argued that those planning engaged research should take account of the distribution of social power, and learn about the ways in which historical injustice has created and reinforced material and epistemic inequalities. In ‘flipping’ Fricker’s (2007) ideas about epistemic injustice, we argue that those planning engaged research should seek to promote ‘fairness in knowing’ by surfacing shared territory on issues of representation, expertise, experience, history and culture, and actively seeking complementary ways of working together. While these issues are crucial, however, we also note that they are not sufficient to ensure that the structures put in place are truly open to dissent, nor that they will necessarily be successful in promoting fairness.

In the case of Indigenous communities, ‘flipping’ Fricker’s (2007) concept was useful but not sufficient to fully capture the ways in which colonialism and its afterlives (the role of hegemonic languages, educational institutions, canons and so on) have undermined and subjugated knowledge diversity. De Sousa Santos’s (2007) work on epistemicide added another powerful frame to address the centuries-long disavowal of non-Western knowledges, and provided us with an opening towards accounting for an ecology of knowledges – a dialogic method that includes processes of translation and negotiations in support of concrete social struggles (de Sousa Santos, 2018).

DETECT worked with a constellation of experiences and expertise. We foregrounded traditional Guyanese Indigenous world views on health and well-being, which presuppose the holistic integration of the environmental, the spiritual and the social spheres. In these world views, nature and the environment are not viewed as distinct entities, nor divorced from human thoughts and actions. Our aspiration to use engaged research to create an intervention that met community well-being needs, while safeguarding cultural and traditional practices, required the academic and industrial partners to question their epistemic practices and ways of thinking, and positively value Indigenous knowledges. Stakeholder groups and communities that have experienced forms of oppression, often over many years, have developed ways of understanding, representing and responding to change these conditions to promote empowerment. We argue that it is the responsibility of researchers both to learn about community histories and epistemologies, and to attempt to contribute positively to the futures of those with whom they engage. We primarily achieved this by recognising, supporting and promoting existing local agency and Indigenous leadership, and requiring non-Indigenous researchers to relinquish control over research processes and analysis. It is important to note that funding commitments to communities in the Global South and the long-term sustainability of research projects must account for this proposed decentralisation. Inclusion, participation and sustainability require funds for diffused community-level work; confidence in funding commitments must be maintained. Decentralisation may be more costly than relying on the expertise of international consultants working in the monitoring and evaluation sector, but it allows for a shift in power relations and meaningful support for local struggles.

Finally, our thoughts turn to the transferability of the theoretical perspectives and practical application of the work undertaken through the different projects we have explored in this paper. Several of the authors of this paper are members of a Research England-funded research group, ‘AstrobiologyOU’. In our planning for this multidisciplinary research group, our stated intention was to embed an ethos of engaged research across (and beyond) disparate academic domains and disciplines (for example, science, international development, governance and education). Supporting a group of stakeholders of different backgrounds, experiences and cultures into a community committed to ethically informed engaged research calls for continuing reflection and targeted support. A further aim of this paper is therefore to share what we have learnt about pragmatic and ethical approaches to the design, management and evaluation of engaged research by supporting a programme of collaborative workshops and targeted support. It is in this light that our final argument is that those planning engaged research with historically oppressed communities need to base decision making primarily on ethical principles, only shifting from this position in extremis to adapt for pragmatic reasons.

Funding

‘Engaging opportunities: Connecting young people with contemporary research and researchers’ (EP/K027786/1: Engineering and Physical Sciences Research Council).

‘An open research university: How to embed public engagement within the culture of research’ (EP/J020087/1: Engineering and Physical Sciences Research Council).

‘Integrated Space Technology Vector Control for Enhancing community health and resilience against escalating climatic disruptions (DETECT)’ (UK Space Agency International Partnership Programme, ‘Call 3’).

‘Astrobiology at The Open University’ (UKRI, Research England, Expanding Excellence in England).

Declarations and conflicts of interest