The first phase of the Centres for Exchange design and learning initiative — aimed at exploring routes to more effective and equitable health research – focused on synthesising existing knowledge on engagement, participation, and knowledge exchange. Our collaborative team conducted a rapid review of the literature, a series of stakeholder interviews, and a public survey of researchers and engagement practitioners worldwide.1 Findings were then analysed and contextualised through a series of participatory analysis workshops with our broader project team (from South Africa, India, Brazil, Mexico, Zimbabwe, France, and the UK).
Throughout this phase engaged researchers, engagement practitioners, and community builders from across the world shared what they are experiencing in their work to represent and involve diverse communities and what they feel is needed to more radically transform the research ecosystem.
Genuine engagement is a non-negotiable
More and more I feel this work is non-negotiable. There are ethical implications as well as power dynamics and differentials that we need to be continuously challenging and considering in the global health research space” (Survey respondent).
Firstly, the landscaping research confirmed that community engagement is almost universally understood as essential for both the practical objectives and ethical imperatives of research. More than 94% of survey respondents agreed that engagement is necessary across the research life cycle, with 71% indicating that they see it as fundamental to the conduct of ethical research. Respondents also emphasised the value of engagement and participation in terms of improving the quality of research.
“When communities have a seat at the table and a voice, research is more relevant.” (Survey respondent)
Need for change in the way communities are engaged
At the same time, the landscaping brought forth a clear criticism of the potentially utilitarian nature of some modes of engaging communities, which focus primarily on achieving desired research outcomes (increasing consent rates and study enrolment, ensuring community buy-in, facilitating smooth research operations), thereby instrumentalising participants and communities.
“What we have to fight against all the time is the “can you just get me a few patients to tell me this?” kind of engagement. This kind of top down, instrumental approach — “how’s this going to help my research without me being invested in it” — does NOT work.” (key informant)
Respondents called for a more transformative approach to engaging communities in research, acknowledging that a genuine commitment to power shifting in research is rarely at the centre of engagement work in practice. In this context, engagement can serve to maintain, obscure, or even reinforce existing inequalities in the structure of health research.
“The ambition of one group to “engage” another group represents a plaster that protects the status quo of research.” (survey respondent)
Respondents acknowledged that these decisions, when not made carefully, can serve to reinforce or create new forms of exclusion and inequality — centring some voices within communities and marginalising others. A number of respondents spoke of the need to more explicitly acknowledge — and work to redress — the historically uneven distribution of power in the production of health knowledge.
“Health research is still framed by colonial and neo-colonial powers. We need epistemic equity and justice!” (survey respondent)
Unpacking the terminology
Many respondents noted the lack of precision and coherence in the use of terminology of community or public engagement and participation (or related terms like social participation, community-led research, patient involvement, amongst others), which can cloud the objectives of the work itself.
“Many of these terms are used interchangeably, but what is more important is equity, accountability and inclusive research cultures achieved through governance and appropriate processes and practices that lead and design from equity.” (survey respondent)
Some advocated for an explicit move away from the language of community engagement, arguing instead for a focus on the language of community participation, community ownership, or community leadership.
“For us, it’s less about community engagement but rather about community leadership. When we [scientists] are talking of engaging, we are not saying that communities should lead. We are saying that we should involve the community. But they should be at the forefront of everything that we do. We must give them the decision-making power.” (key informant)
A few participants went even further to critique the fundamental premise of community engagement and participation as based on a problematic binary between researchers and communities, advocating instead that we centre a new understanding of what inclusive and intersectoral ‘research communities’ could look like.
“There can be a very problematic binary between researcher and community going on — and there is a risk that the language of engagement inadvertently reinforces this binary. I am interested in how researchers can develop greater awareness of their own positionality and privilege.” (Survey respondent)
“Why are researchers no longer members of communities? Why are community members assumed not to be researchers?” (survey respondent)
Maria Malomalo
(Restless Development, Zimbabwe)
What stands in the way of meaningful and effective knowledge exchange?
Despite explicit commitments to meaningful community engagement, respondents pointed out that there are still significant barriers to effective collaboration and knowledge exchange, tied to structural constraints in the current research ecosystem. Some pointed to the commoditization of knowledge as the source of these challenges:
“Knowledge is seen as a commodity when it is actually a societal resource. When it becomes a commodity it is owned by only a few in power and not by those who create this knowledge in the first place.” (key informant)
In this context, there are still far too few incentives that encourage researchers to prioritise engaged and participatory research in their own professional lives. Those researchers who commit to more collaborative, inclusive, and participatory approaches to knowledge production can see their careers falter.
“The current system of academic assessment and reward makes it challenging for many researchers to carry out the necessarily complex and time-consuming work of collaborative, participatory research and community engagement. Funding bodies and academic institutions should be aware of the (perhaps unintentional) roles they can play in discouraging engagement by rewarding particular forms of academic achievement (notably first/sole authorship of peer-reviewed journal articles), while undervaluing other kinds of contribution to knowledge production and dissemination.” (key informant)
Others highlighted how some funders’ exclusionary processes also served to reify existing power inequalities in research by working in favour of large, urban-located, global North institutions. Representatives of funding institutions whom we interviewed also acknowledged how their ways of working could amplify inequities
“We also need to recognise that we [funders] have played a role in perpetuating class, race and disability prejudices and biases through our work so it is important we remain conscious and critical of this.” (key informant)
Sarah Iqbal
(India)
The most commonly discussed determinants of meaningful engagement and knowledge exchange centred on the importance of trust, primarily secured through long-term relationships built on shared experiences and understandings.
What enables genuine knowledge exchange?
“It’s about building a rapport with the communities, building relationships with them, and ensuring that they are involved in the whole process, and not just as we are disseminating findings. We should constantly make sure that relationships are built on communication, trust, openness and mutual respect.” (key informant)
When these relationships of trust and reciprocity are in place, projects can begin to move toward more genuine forms of collaboration and co-ownership.
This is only possible, however, when mechanisms are in place to enable direct funding, as well as focused training and support, for communities to shape and lead research that affects them. For this to take place, projects and funders must recognise, celebrate, and strengthen existing community knowledge systems and local assets.
Tasha Koch
(Eh!woza, South Africa)
What change could look like
Reflecting on the changes required to foster more equitable and inclusive modes of knowledge production and knowledge exchange, a number of respondents focused on the need for new infrastructures for knowledge exchange that focus on fostering collaboration over time.
“There must also be investment in knowledge communities and learning networks that foster innovation and centre emergent forms of ‘local’ knowledge.” (key informan
These structures must be flexible enough to allow for responsiveness to evolving local research priorities and needs.
Participants also pointed out that systemic change would only be possible if fostered through collaboration between knowledge brokers (including funders, research institutions, and policy makers) who could cohere together around shared sets of principles and practices. In particular, it was suggested that global funders and academic institutions should partner more proactively with local funding bodies and research networks. Linked to this, a number of respondents advocated for the need to devolve funding and decision-making to more local bodies and to explore more participatory modes of funding.
“Communities need to have more of a say in what’s actually researched. This is a high priority. The global health agenda is far from being set by the community. We need to work on moving the research prioritisation process to be more emergent from the global South.” (key informant)
In particular, many respondents emphasised the importance of investing in grassroots and Global South-based knowledge communities and learning networks that foster collaborative, cross-project learning and promote large-scale changes in the research ecosystem.
Gustavo Matta
(Fiocruz, Brazil)
1 For this work we conducted in-depth interviews with key stakeholders (n=26) across multiple country locations including Brazil, South Africa, Kenya, India, and the UK. Stakeholders carry a wide body of expertise in their work through CBOs, NGOs and other institutional bodies. Rapid surveys were shared with a broader network of researchers and engagement practitioners (n=147) respondents globally, with most respondents reported as residing in the African region, followed by the European region. The majority of participants were female-identifying, over the age of 30, and possessed a postgraduate degree. From the survey pool, respondents primarily work across community engagement or the social sciences, working with low resource communities and those experiencing conditions of adversity. Both datasets were analysed using a thematic analysis approach.