Meaningful routes for equitable health research: charting a way forward

Since our last blog post, our collaborative team has completed the landscaping phase of the Centres for Exchange design and learning initiative — aimed at exploring more effective and equitable health research. One key insight emerging from this first phase: while community engagement is crucial to the conduct of ethical and meaningful research, it is far too often conceived of and practised in an instrumental manner. The focus is often either on getting community buy-in and increasing consent rates or on conveying information, rather than on creating space for genuine co-ownership, co-design, and collaborative knowledge exchange. The good news: there is a sea change underway, with many new, disruptive models of practice emerging. A key aim of this project is to learn from these forms of embedded knowledge and experience to foster transformative modes of research and equitable knowledge sharing.

The overall aim of the Centres for Exchange project, commissioned by the Wellcome Trust is to support more effective and meaningful routes for diverse communities to participate equitably in research, ensuring that research can more effectively respond to local needs as well as the global health challenge ambitions that underpin Wellcome’s strategy (focused on infectious diseases, climate change, and mental health).

The global evidence synthesis process we undertook included a rapid literature review, a series of in-depth interviews with engagement experts, and a rapid public survey of researchers and engagement practitioners worldwide. We then held participatory workshops with the broader project team* (from South Africa, India, Brazil, Mexico, and Zimbabwe) to rapidly sense-check and contextualise findings of this first phase of rapid learning. What follows is a distillation of what engagement practitioners and community builders across the world are experiencing in their work to represent and involve diverse communities and calling for in order to more radically transform the research ecosystem.

Exploring the ‘why’ and ‘for whom’ of engagement

An overarching insight drawn from the rapid landscaping** is that community engagement is now understood to be 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% stating that it represents an essential component of ethical research. Respondents explained:

“People should not be treated as beneficiaries but as the key actors/owners of their own development — as a matter of human dignity.” (Survey respondent)

“More and more I feel this work is a 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)

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,” one survey respondent explained, “research is more relevant.” Another survey respondent articulated it simply: “the greater the participation, the greater the quality of research.”

At the same time, the landscaping brought forth a clear criticism of the potentially utilitarian nature of some modes of engagement, 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?” 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. One survey respondent suggested: “the ambition of one group to “engage” another group represents a plaster that protects the status quo of research.”

As another stakeholder put it:

“Who speaks for the ‘community’? Who speaks to the ‘community’? Who sits on CABS [Community Advisory Boards] and other formal structures of accountability and feedback? Do they represent all members of affected communities? Who is invited to participate in collective processes? Who are the mediators and intermediaries? “(key informant)

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 in turn 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)

Others acknowledged the particular political histories of these concepts and the antecedent impacts of the choice of language on values and practice. 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)

“Actual community participation to me is the ownership of the community in which the knowledge seeker/worker is accountable to and for the community.” (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 — “Why are researchers no longer members of communities? Why are community members assumed not to be researchers?” (survey respondent) — 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)

Given the potential limitations of the concept of community engagement and the transformational aspirations of this project, we have chosen to focus instead on the complex, socially embedded, fluid processes involved in the production and exchange of knowledge. This shift also brings focus to the key point that knowledge is not simply gathered and transferred from one place or person to another in a directional flow. Rather, knowledge is produced through a series of context-specific encounters between diverse people, mediated through (often unequal) relationships between these knowledge actors, and framed by particular epistemological orientations and assumptions. This knowledge is then tailored and transformed to meet the unique needs of different categories of knowledge users. At each step, the processes require acts of translation that (re)shape forms of knowledge into research data and scientific evidence.

To describe this complex process, we use the shorthand phrasing ‘knowledge exchange,’ while also acknowledging the potential for this terminology to reduce the relational process to a transactional encounter. In our use of the term, we understand ‘knowledge exchange’ expansively — as the processes through which different forms of knowledge move between spaces, and across geographic and socioeconomic divides, to have particular impacts on the world.

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 commoditisation 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 engagement and participatory research in their own professional lives. Those researchers who commit to a more collaborative, inclusive, and participatory approach 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)

A number of respondents pointed their concerns squarely at research funding institutions, suggesting that pressure from funders to rapidly produce new data and demonstrate impact in short term project cycles made it impossible for researchers to invest more meaningfully in developing equitable relationships. Asked what stood in the way of more genuine forms of participation and collaboration in research, one respondent replied:

“Funders! Wanting results tomorrow and driving quick, dirty and extractive research that does not involve the community through the WHOLE research process, including analysis!” (Survey respondent)

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)

In this context, the work of engaging communities is often relegated to so-called engagement practitioners, rather than being seen as a fundamental part of research itself. As one key informant explained:

“[Community engagement] should not become an expertise in itself where researchers sidestep their responsibility by delegating it to a CE expert” (survey respondent).

What enables genuine knowledge exchange?

The most commonly discussed determinants of meaningful engagement and knowledge exchange centred on the importance of trust, primarily secured through the fostering of long-term relationships, built through shared experiences and understandings.

“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 we build that relationships are built on communication, trust, openness and mutual respect.” (key informant)

In some cases, this relational work requires the involvement of skilled intermediaries or brokers who help to support relationship-building across divides of power, privilege, perspective, and geography.

“Skilled intermediaries/facilitators [are needed] as part of centres of exchange that can create safe and equitable spaces, deal with conflict constructively and amplify voices of all constituencies, but especially those who are minoritized.” (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. Eventually, the aim is for ownership to shift into the hands of communities:“when the community realises that it is ‘our’ project, our issue, our challenge, and thus our solution” (key informant).

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, informed by the principles of asset-based community development.

While emphasising the need to centre ‘local’ voices, respondents also acknowledged that diverse perspectives were important — “local and non-local mixed teams — it’s not one or the other but both! A mix of emic and etic [forms of] knowledge” (survey respondent).

What change could look like: preliminary reflections

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 informant)

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)

“[Funders] should consider funding intermediaries who are able to make more localised decisions about who is at the forefront of innovative practice.” (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.

“They need to invest in gathering learning from the grassroots, small scale.” (key informant)

“This [local] learning will lead to something new if you follow up on it, ensure the ideas are moving forward and being shared.” (survey respondent)

Project next steps

In addition to exploring the dynamics of engagement and knowledge exchange, we asked all survey respondents and key informants to identify projects or organisations that they felt were exemplary or innovative — leading to a list of 96 potential projects to explore.

Based on the insights from the rapid landscaping, we developed a set of inclusion criteria to identify promising models of practice. We agreed that the selected models of practice should:

We focused specifically on organisations located in South Africa, Kenya, Brazil, Mexico and India, but also included some organisations outside of these geographies.

Based on this selection process, we identified 20 models of practice to explore further through case studies, involving interviews with key informants at each organisation. We then held a series of workshops across our focus countries to bring together regional insights across the case studies and begin to co-design new models.

Our next four blog posts will dive into the lessons drawn from this process in each geography, exploring experiences and perspectives from each of these contexts.

*The Centres for Exchange project, commissioned by the Wellcome Trust’s public engagement team, is led by Lindsey Reynolds and Clemence Petit-Perrot from Pivot Collective in partnership with Pradeep Narayanan from Praxis, Maria Malomalo from Restless Development, Tasha Koch from Eh!woza, Bella Starling from Vocal, Gustavo Matta and Adalton Fonseca from Fiocruz, as well as Sarah Iqbal, Nabeel Petersen, and Renata Cortez-Gomez.

**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 like the Wellcome Trust, the African Population and Health Research Centre, and the United Nations (amongst others). 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.

For more information about the Centres for Exchange project, please reach out to us at cfe@pivotcollective.org