What does it mean to take a 'leave no one behind' approach to community engagement and involvement in global health research?
- Published: 14 September 2021
- Version: V1.0 - September 2021
- 11 min read
Introduction
In this last publication for the 2020-2021 community engagement and involvement (CEI) learning series, we discuss what it means to take a CEI approach that prioritises ‘leaving no one behind’[1]. As with other resources developed in this series, this text builds on a series of conversations between the lead author and a group of Low and Middle Income Country-based experts who bring a depth of experience and critical insights to current debates on what constitutes good CEI practice.
The intention of the series as a whole has been to encourage funding applicants to ask themselves hard questions about inclusivity, power and bias as they embark on the initial thinking and design of the CEI component of a given proposal. Here we take on the existing rhetoric of ‘leaving no one behind’ in global health research and how it is sometimes misinterpreted as a demographic tick-box exercise. We ask instead: What is getting left behind in global health research, why is ‘leaving behind’ a phenomenon of contemporary development and global health processes, and how can these issues be addressed through a CEI approach, albeit with limitations?
For NIHR's Global Health Research portfolio, meaningful and inclusive CEI is a requirement of all applications for funding, and the organisation’s strategic approach to CEI is shaped by the pledge to ‘leave no one behind’ as articulated in the United Nation’s Sustainable Development Goals (SDGs)[2]. What this means in practice is that NIHR-funded global health researchers and stakeholders are expected to take into account experiences of marginalisation, discrimination and inequality where they work, and in how they work, and to then identify measures to address these challenges.
There are a wide range of tools and guidelines developed to help governments and stakeholders to take seriously the issue of ‘leaving no one behind’ when it comes to health systems planning and health services accessibility and quality[3]. Here we reflect on what CEI practitioners have learned ‘by doing’ in terms of working with groups and individuals who experience multiple and intersecting forms of marginalisation and vulnerability and seeking to engage them meaningfully in processes of research[4-6].
What is often left behind in global health research?
A common understanding of the SDG’s ‘leaving no one behind’ agenda centres on addressing the needs of individuals and groups with shared characteristics (ethnicity, race, gender, religion, socio-economic status, geographic location and so forth) that render them more vulnerable to extreme poverty, ill-health and social exclusion[7]. Over the past nearly two decades, a social determinants approach to understanding the drivers of health inequities has shed further light on the systems and structures of power that shape these dynamics[8-9].
While there has been tremendous advancements in understandings of the drivers of health inequities, public health researchers have still struggled to meaningfully incorporate the diverse perspectives of those who experience these inequities in their day-to-day lives. What is therefore often left behind in global health research is this much broader landscape of valuable knowledge, which includes indigenous, non-‘Western’, culturally-specific and experiential forms of knowledge[10-11].
Guided by a commitment to ‘leaving no one behind’ that extends beyond the rhetoric of the SDGs, the Centre for the Study of Equity and Governance in Health Systems (CEGSS) has worked to expand what it means to do research with marginalised and vulnerable populations. There are many lessons to be drawn from this work, but for the purposes of this guide we mention two:
- The role of grassroots organisations who have established relationships of trust with marginalised and vulnerable populations is absolutely crucial in the context of building inclusion into global health research processes. Their involvement should be considered at all stages of research, for example, in how research agendas are formed, how research projects are designed and implemented, in analysis processes and in the translation of research into something that local communities deem as both valuable and needed. Grassroots organisations that are particularly skilled at integrating diverse forms of knowledge in their own practices are best positioned to help broaden the scope of whose knowledge counts and what kinds of knowledge count within a given research programme[12].
- The second important lesson for CEGSS has been that empowering meaningful inclusion of marginalized groups within research over time as an overarching agenda, sometimes demands stepping back from a focus on the research to instead put effort towards meeting the urgent needs of these groups, which might include issues related to personal safety, government reprisals, emergency housing and issues of food security[13]. In practice, this has meant that over time CEGSS has altered the makeup of its core team and have added staff with legal expertise, in recognition of the particular needs of internally displaced indigenous groups and those targeted by the state. This is not a required element of CEI per se, but instead it is a reflection on what it means to do CEI ethically, paying with close attention to the lived experiences and needs of vulnerable people[14]. In this sense, through doing CEI a research team or group might realise that they need to seek out resources beyond the remit of their time-bound project and commit to longer-term processes of change in order to achieve ethically responsible forms of inclusivity in research.
Why are people being left behind?
Leaving behind – whether in reference to certain populations or alternative forms of knowledge – is the result of historical processes of discrimination, bias and exclusion[15]. This brief is not the place to unpack the complexity of this topic as it relates to health systems or health research, as the specific forms of inequity will vary widely across contexts. Instead, we suggest that all members of a given research collaboration should take seriously the ways in which unequal relationships of power shape their work, their team structures, their disciplinary biases and their relationships with diverse communities[16].
It is not possible to sidestep the political nature of doing global health work, but what CEI brings to the table is an opportunity to better understand these dynamics as they play out in particular places and at particular times, how they influence health in the broadest sense of the term, and what levers of change can be acted on[17].
How can these issues be addressed via CEI and what are the limitations?
Now to some thoughts on how to address the question of 'leaving no one behind' within the context of CEI work. One of the greatest challenges of CEI in global health research is the tension that exists between capturing the perspectives of those most vulnerable and marginalised within a given group, while at the same time achieving sufficient consensus on research processes and outcomes at community level in order to effectively collaborate[18-19]. To repeat an often stated phrase from this learning programme, there is no 'one way' to do CEI, and subsequently there is no 'one way' to navigate this tricky balance between collaboration versus consensus and challenging the status quo versus dissent.
Furthermore, it is important to remember that not everyone wants to join in the processes of development or global health such as these fields are currently structured. To the contrary, there have long been attempts to push forward alternative approaches to achieving healthy societies and communities that require different forms of collaboration and challenge existing hierarchies of expertise in the medical sciences[20]. In a pragmatic sense, there are ways to design CEI to anticipate the range of ideas and perspectives on a given set of research questions that might emerge at local level.
Some forms of CEI practice might go beyond what public health researchers are trained to do, and may therefore require additional input and capacity-buidling assistance from organisations and individuals with experience in participatory methods and mutual learning approaches. In this sense, doing good listening in CEI means being open minded enough to having one’s own biases and expert knowledge challenged, and the willingness to be adaptive and open to change in response. The shared goal of “leaving no one behind” has the potential to be more than an empty slogan if the global health research community takes seriously the complexity of what this means in practice and takes responsibility for meeting the challenges of meaningful inclusivity in their work.
References
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- Sachs, J, Schmidt-Traub, G, Kroll, C, Lafortune, G, Fuller, G. and Woelm, F. Sustainable Development Report 2020: The Sustainable Development Goals and Covid-19 Includes the SDG Index and Dashboards. Cambridge, Cambridge University Press 2021.
- Zamora, G, Swift Koller, T, Thomas, R, Manandhar M, Lustigova, E, Diop, A. and Magar V. Tools and approaches to operationalize the commitment to equity, gender and human rights: towards leaving no one behind in the Sustainable Development Goals. Global Health Action 2018, 11:sup1, 75-81.
- Abate, K. H. et al. Measuring progress and projecting attainment on the basis of past trends of the health-related Sustainable Development Goals in 188 countries: an analysis from the Global Burden of Disease Study 2016. The Lancet 2017, 390(10100): 1423–1459.
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- Labonté, R, Blouin, C, Chopra, M. et. al. Towards health-equitable globalisation and redistribution: WHO Commission on Social Determinants of Health, 2007 (.PDF). University of Ottawa, Institute of Public Health and the World Health Organization 2007.
- Marmot, M. (on behalf of the Commission on Social Determinants of Health) Achieving health equity: from root causes to fair outcomes. The Lancet. 2007, 370: 1153-1163
- Ottersen OP, Dasgupta J, Blouin C, Buss P, Chongsuvivatwong V, Frenk J. et al. The political origins of health inequity: prospects for change. The Lancet 2014, Feb 21;383(9917): 630–67.
- Memon, R. et al. Recognising values and engaging communities across cultures: towards developing a cultural protocol for researchers. BMC medical ethics 2021, 22(1): 47–47.
- Lawrence, D. S, and Hirsch, L. A. Decolonising global health: transnational research partnerships under the spotlight. International Health 2020, 12(6): 518–523.
- Flores W, and Jeannie Samuel. Grassroots organisations and the sustainable development goals: no one left behind? BMJ 2019, 365:l2269.
- Flores, W, and Alison Hernandez. Health Accountability for Indigenous Populations: Confronting Power through Adaptive Action Cycles. IDS Bulletin 2018, 49. 10.19088/1968-2018.133.
- Gostin, L. O. et al. The legal determinants of health: harnessing the power of law for global health and sustainable development. The Lancet 2019, 393(10183): 1857–1910.
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