{
"meta": {
"title": "Blog - Pivot Collective",
"description": "Insights, reflections, and learning from Pivot Collective's work in participatory research, knowledge exchange, and community-led action."
},
"hero": {
"badge": "Reflections",
"title": "Read",
"title_gradient": "Our Blog",
"description": "Insights and reflections from our work in participatory research, knowledge exchange, and community-engaged practice."
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"posts": [
{
"id": "shifting-power-a-praxis-reflections-from-theworkshop-in-india",
"title": "Shifting power, a Praxis: reflections from theWorkshop in India",
"slug": "shifting-power-a-praxis-reflections-from-theworkshop-in-india",
"author": "Clémence Petit-Perrot and Siphokazi Tau, Pivot Collective",
"date": "2025-11-27",
"categories": [
"community-engagement",
"knowledge-exchange",
"participatory-research",
"health-research",
"indigenous-knowledge"
],
"featured_image": "/images/blog/shifting-power-a-praxis-reflections-from-theworkshop-in-india-1.jpg",
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"medium_url": "https://medium.com/@PivotCollective/shifting-power-a-praxis-reflections-from-theworkshop-in-india-d346408d6f21",
"sections": [
{
"heading": null,
"paragraphs": [
"Clémence Petit-Perrot and Siphokazi Tau with fellow participants Somita Pal and Prachee Agrawal",
"From 10–14 November, more than eighty researchers, practitioners, activists, and community organisers gathered in Bangalore for theWorkshop, Praxis Institute for Participatory Practices’ annual immersion into participatory research.",
"Praxis is one of eight partner organisations partnered with, in Phase 2 of the Centres for Exchange (CfE) programme, which aims to find and share better ways for communities most affected by health challenges to inform health research. Praxis’ project aims to influence health research by embedding community participation at its core, addressing the exclusion of marginalised voices. It is deeply informed by the Indian, and South Asian contexts where “ entrenched caste, class, and gender inequities exacerbate access to healthcare and participation in health research.”",
"For the CfE cohort, the gathering came at a pivotal moment: funded projects’ learning questions are drafted, planning is complete, and projects are beginning implementation. Six CfE partner organisations: The Banyan, ATREE, Shujaaz, Lwala, SEARCH and, of course, Praxis, joined, creating a unique opportunity to deepen connections, foster cross-project learning, and strengthen collective understanding of participatory research.",
"As part of the Centres for Exchange Learning and Evidencing Partner team, we attended to document theWorkshop and support Praxis in starting to answer their learning question: “How can participatory practices in knowledge exchange spaces meaningfully shift hierarchical health research systems?”",
"By the end of the week, it was clear that theWorkshop was not simply engaging with this question rhetorically, but wrestling with it, enacting it through careful practice. The gathering operated as a living example of a learning environment where knowledge emerges from dialogue, where communities shape insight, and where power is openly contested."
]
},
{
"heading": "Participatory Action Research as a science from the South",
"paragraphs": [
"Participatory Action Research (PAR) can be defined as “a research paradigm within the social sciences which emphasizes collaborative participation of trained researchers as well as local communities in producing knowledge directly relevant to the stakeholder community” (Coghlan and Brydon-Miller, 2014).",
"PAR has evolved dramatically over the past decades, from Participatory Rural Appraisal to more radical, justice and action-oriented approaches that aim to actively transform the world, rather than simply to study. . This orientation, actively moving towards a more equitable world, makes PAR critically engaged and inherently political.",
"As a result, for some funders, especially from the Global North, PAR is often too political to fund: “PAR feels like a round peg that we want to fit into a square hole.” shared one researcher, reflecting on their challenges of getting PAR funded through conventional research funding pipelines?.",
"In this landscape, Praxis is unique for its longstanding commitment to both the practice and pedagogy of participatory research. Over 27 years, nearly 1,900 participants have passed through theWorkshop, a space for teaching and learning through which Praxis has continually rethought methods, updated political analysis, and centred community knowledge.",
"The Praxis team is clear that PAR can not be captured in a “toolkit” but must be learned through embedded practice. They recognise that it is an evolving science, grounded in politics, experience, and struggle.",
"This grounding makes theWorkshop more than a training exercise. It is a site of continuous epistemic renewal, guided by the knowledge and understanding that the communities involved share. From the outset, Praxis facilitators reminded us that in PAR “the role of the researcher is to understand the systemic issues. However the research participants must tell and own their stories.”"
]
},
{
"heading": "Holding and releasing the space",
"paragraphs": [
"Field work in Nangamalai village, ~Tamil Nadu province",
"Hosted at the leafy Ecumenical Christian Centre (ECC) in Bangalore, theWorkshop unfolded in a space that Praxis intentionally shaped into a learning environment. Participants wandered along shaded paths where large swings hung from branches, and posters of decolonial thinkers, Paulo Freire, Naila Kabeer, Simone de Beauvoir, Walter Mignolo, bell hooks, and Frantz Fanon amongst others, were pinned to trees, meeting us on the way to and from sessions. Praxis’ books and publications were laid out during breaks, inviting ongoing reflection. These small but deliberate choices signalled that this would be a space where ideas, histories, and power would be examined with intention.",
"Praxis uses an approach called Sindhanai, a Tamil word that means “thinking and reflection,” in all their activities. As an approach, it centres their commitment to embedding critical thinking and constant and intention self-reflection and documentation moments in all their activities. This way, they are constantly learning and adapting, which often also means deconstructing mainstream ways of doing things.",
"Aligned with this approach, Praxis opened the workshop sessions with the kind of structured one-directional, Powerpoint-driven learning sessions we are all accustomed to receiving at workshops and training, and then intentionally dissolved this structure, shifting power to the participants in the space. By Day 2, participants were challenging tools, assumptions, and methods. When questions arose about whether some tools reinforced hierarchies, facilitators leaned into the critique. As lead facilitator Pradeep Narayanan emphasised: “The facilitator does not have the answers. There is no wrong and right.”",
"Participants drew deeply from their own practice. Evelyn Kemunto from Shujaaz reflected: “In the community, there are no boundaries… There is no I, just we.” These exchanges showed how participants were reshaping the method itself. As Pradeep noted: “Now people are negotiating. It is therefore an unworkshop.”",
"Pradeep continued challenging the group: “Tools are not important. It is why you are using them that matters.” The only non-negotiable was dignity.",
"By Day 3, power had shifted noticeably. A WhatsApp group initially created for logistics became a peer-learning space (that has stayed lively in the weeks following the workshop). Facilitators rotated, introducing sessions on ethics and theatre-based exercises on power. Participants enacted power dynamics: parent/child, principal/learner, boss/employee, and explored how gestures and tone shape hierarchy, before attempting to “equalise” power in each scenario."
]
},
{
"heading": "Fieldwork and its tensions",
"paragraphs": [
"The field experience embedded within theWorkshop powerfully mirrored the dynamics we had been analysing. On Day 4, we gathered at 05:45 am and travelled three hours to the villages of Nangamalai and Ramandoddi, where Workshop participants engaged with residents using the methods discussed throughout the week.",
"We were quickly confronted with the complexity of applying the theory covered the previous days to a real-life situation: Participants guided the conversation, asking questions in an “interview” type format without quite succeeding to truly dialogue with community members present. Time constraints limited community interpretation, and therefore participation from a broad and inclusive group of community members.",
"Participants repeatedly tried to centre “health topics” (as per the assignment given by Praxis) while residents emphasised land, caste, income, identity, and relationships with the environment as the issues that mattered to them.",
"These exchanges revealed complex and interconnected understandings of health, and made clear how easily research processes can default to extraction when power is uneven. Despite these hurdles, a wealth of information was shared in a few hours, providing a complex picture of social issues facing the two communities.",
"Yet, one participant voiced what many were feeling: “Are we wasting the community’s time?” It was an uncomfortable but necessary question. It pushed us to reconsider what participation really means, not treating communities as respondents, but recognising them as co-researchers whose knowledge shapes the inquiry. As Pradeep explained, through this collaboration a newly formed collective begins to build a sense of shared “citizenry”.",
"Yet he also reminded us of a crucial tension: involving communities in research is not the same as involving them in every decision. Researchers remain accountable for the process and its consequences. As Pradeep put it plainly: “the buck stops with you, the researcher.”"
]
},
{
"heading": "A Praxis and a movement",
"paragraphs": [
"Members of the Praxis team: Sam Jacob, Sarulatha S, Neha Narayanan, Nafeesa Khan, Tarini Shipurkar, and Shishupal Prajapati",
"By the final day, it was evident that Praxis was nurturing more than a training space; they were cultivating a movement grounded in Southern epistemologies and ethics of power-sharing. bell hooks’ framing of communities as sites of resistance (hooks, 1989) resonated throughout.",
"TheWorkshop offered a powerful hypothesis: Power shifts when learning spaces embody the values they teach, when facilitators let go, when participants own the process, when tools are interrogated, when community knowledge is centred, and when accountability is held by those with structural power.",
"We want to commend the Praxis team, Pradeep, Neha, Sam, Tarini, Sarulatha, Sarah, Nafeesa, Shishupal, Mohan, Sabu, Anusha, Stanley, Dheeraj, Indu and Tom for their tireless organising and for holding theWorkshop with such care and intention. Their leadership in facilitation, and the depth and quality of what they shared throughout the week, were outstanding.",
"As the Centers for Exchange projects’ implementation unfolds, we remain committed as Learning Partners to sharing what we learn about how participatory, community-led, and embedded approaches to knowledge exchange take shape across different contexts.",
"Over the next two years, we will continue collaborating with project teams to surface emergent reflections and insights as learning evolves. We will also work alongside funded project teams and partners at the Wellcome Trust and Development Dynamics to enable open, collaborative exchange with others committed to this work.",
"We invite you to walk with us, follow our journey, share your reflections, and help shape a collective vision for more just and inclusive research practices.",
"References",
"Coghlan. D and Brydon-Miller, M. 2014. Participatory Action Research. In: The SAGE Encyclopedia of Action Research. David Coghlan and Mary Brydon-Miller Editors, London: SAGE Publications Ltd. pp. 583–588 Available at: https://doi.org/10.4135/9781446294406.n259 [Accessed 25 Nov 2025].",
"hooks, b. 1990. Homeplace (A Site of Resistance). Yearning: Race, gender, and cultural politics. Boston, MA: South End Press. pp. 383–389."
]
}
]
},
{
"id": "rooted-in-land-and-place-reflections-on-knowledge-and-power-in-kenya",
"title": "Rooted in Land and Place: Reflections on Knowledge and Power in Kenya",
"slug": "rooted-in-land-and-place-reflections-on-knowledge-and-power-in-kenya",
"author": "Lindsey Reynolds and Siphokazi Tau, Pivot Collective",
"date": "2025-07-03",
"categories": [
"health-research",
"knowledge-exchange",
"participatory-research",
"indigenous-knowledge",
"community-engagement"
],
"featured_image": "/images/blog/rooted-in-land-and-place-reflections-on-knowledge-and-power-in-kenya-1.jpg",
"images": [
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"medium_url": "https://medium.com/@PivotCollective/rooted-in-land-and-place-reflections-on-knowledge-and-power-in-kenya-4c95c830d9eb",
"sections": [
{
"heading": null,
"paragraphs": [
"This post marks the beginning of a new chapter in our work as learning partners on the Wellcome-funded Centres for Exchange (CfE) initiative. Building on insights and learning from Phase 1, this second phase brings together a new cohort of community-based organisations across Kenya, South Africa, and India. Over the next two years, we’ll be sharing reflections and insights from this evolving process, beginning here with our first visit to two Kenyan partner sites.",
"Last month, our team joined two powerful workshops in Kenya, one with Lwala Community Alliance in Homa Bay and another with Women’s Climate Centres International (WCCI) in Kakamega. These gatherings were part of the new phase of the Centres for Exchange (CfE) initiative, a Wellcome-funded program supporting community-led approaches to knowledge exchange (how knowledge is created and shared together) in global health and development. CfE brings together grassroots organisations, researchers, and institutional partners across Kenya, South Africa, and India to co-create more inclusive, relational, and participatory ways of doing research.",
"As learning partners in this next phase, our role is to accompany the eight funded organisations in documenting, reflecting, and sharing their learning journeys, centering local leadership and practice along the way.",
"These first workshops brought together partners, community leaders, and local government to explore how participatory approaches can deepen both health research and community engagement. They were also the first in a series of workshops we’ll be co-facilitating with all eight organisations participating in CfE Phase 2, each designed to support collaborative learning and deepen locally grounded approaches to knowledge exchange. While both gatherings surfaced invaluable learning, one moment from our day with WCCI has continued to resonate."
]
},
{
"heading": "A Moment of Redefinition",
"paragraphs": [
"We were midway through a discussion on refining WCCI’s learning questions when we found ourselves needing to pause. The term “grassroots woman” appeared repeatedly in their framing, and we asked the group what exactly they meant by it. The researchers in the room were the first to respond. Their answers came quickly, each response framed by absence: a grassroots woman lacks formal education, lacks access to services, is economically marginalized, and politically underrepresented, has limited mobility. We captured their thoughts on a piece of flip chart paper, a familiar litany of lack: what these women didn’t have, couldn’t access, weren’t included in.",
"The conversation then opened to the two women in the room who had been invited to represent the grassroots volunteers at the heart of WCCI’s work. They were invited to share their own interpretation of the term.",
"One of them paused, then spoke with quiet clarity:",
"A grassroots woman is someone who has a deep understanding of the land and the place where she comes from. She holds knowledge that comes from being rooted there. When you arrive in her village, and ask about the environment, she has insight on everything and everyone. A grassroots woman knows the environment of the place.",
"The room fell silent, and then everyone started to applaud. It was a moment of collective reorientation, not just for our facilitation team but for the WCCI staff and the researchers themselves. The contrast was striking: where researchers saw absence, the community member saw presence and insight. Where researchers had listed what women lacked, the community member described what women held. In that moment, the conversation shifted — from an institutional lens shaped by systems of exclusion (institutional rules, norms, and practices that systematically sideline certain groups or forms of knowledge), to a place-based understanding grounded in relationship, history, and lived experience. This reframing challenged our fundamental assumptions about expertise. It forced us to ask: What do we overlook when we define people by what they lack, rather than by what they hold? The shift from deficit-based (defining people by what they lack) to asset-based (focusing on skills, resources, and knowledge people hold) language revealed how power structures shape our understanding of knowledge itself.",
"This moment also went to the heart of WCCI’s work: recognizing local women not as passive recipients of knowledge, but as knowledge holders who live and farm in changing climates, who steward water and seed systems, who lead without formal title but with deep authority. One of the project team members shared at the end of the workshop that this moment of definitional reorientation crystallised why the project focuses on making space to listen to women not as research subjects, but as deep knowledge producers in their own right. Their intention is to interrupt the pattern of researchers holding authority in spaces like this workshop and instead centre the lived experience of those most connected to indigenous forms of knowledge.",
"The moment also surfaced something deeper: how language carries assumptions, histories, and hierarchies. The researchers’ initial responses weren’t wrong — they accurately described systemic barriers. But by leading with deficits, we had unconsciously centered what communities lack rather than what they know. This moment reminds us of the many ways African feminists have spoken and written about having authority “in our own knowledges,” what the African feminist Charter reflects as claiming “the right to theorise for ourselves, write for ourselves, strategise for ourselves and speak for ourselves” (The African Feminist Charter). It challenged us to think about how our facilitation practices can better uphold those commitments to voice, authorship, and theorising from lived experience.",
"At Pivot, we understand that language is never neutral. It carries power and shapes possibilities. Our commitment to participatory learning means regularly examining the terms we use, questioning our assumptions, and creating space for communities to define themselves on their own terms. This is also central to WCCI’s work. During the workshop, team members reflected that one of the risks in this kind of research is that “grassroots women do not feel safe or comfortable to engage,” especially in contexts where researchers retain power and status and may consciously or unconsciously look down on indigenous knowledge holders. Their project directly addresses these dynamics, working to remove barriers, affirm knowledge holders, and create spaces where local women can speak not only as participants but as producers and stewards of knowledge.",
"In the workshop, we also saw the need for this kind of intentional facilitation. The initial discussion was dominated by researchers, so we paused to invite the women’s perspectives explicitly and ensured translation support so they could share in their own terms. But this moment of reframing didn’t happen in isolation. It was only possible because the workshop itself had been structured to include all voices from the start, using participatory facilitation tools, moving at a pace that allowed everyone to engage fully, and with a shared commitment — from both WCCI and our team — to creating space where local women could speak not just as participants but as knowledge holders.",
"As we walked later through WCCI’s demonstration garden, into the forested paths of Kakamega, and reflected together on the flight home, this moment stayed with us. It reminded us that our role as learning partners is not to bring answers, but to co-create spaces where new understanding can emerge. Where those most affected by climate, health, and extractive research systems (research approaches that take knowledge from communities without giving back or sharing power) can speak on their own terms, and be genuinely heard. Moments like these are why we value the role of a learning partner — where we can use our facilitation, reflection, and research skills to support communities in surfacing and strengthening their own learning."
]
},
{
"heading": "What This Means for Our Work",
"paragraphs": [
"In many ways, this moment with WCCI encapsulates what this next phase of the Centres for Exchange project is all about. Not just learning from communities, but learning with them. Not just broadening participation, but rethinking who defines the terms of engagement in the first place. We’re working to continue to integrate these lessons into our facilitation approach, training resources, and the shared learning strategies we’re developing with partners.",
"As you engage in your own collaborative work, we invite you to examine the frameworks you bring: Whose knowledge are you centering? What assumptions might you be carrying? How can you ensure that those most affected by the issues you’re addressing get to define the terms of engagement themselves? Consider starting your next community meeting by asking participants to define key terms in their own words. This can be a small but powerful shift. You might be surprised by what emerges.",
"This commitment to redefining who holds knowledge and how it is valued is something we carry with us as we move forward in our work at Pivot Collective, where we aim to honour embedded knowledge, support relational ways of working, and challenge extractive models of global health and development. Over the coming months, we will continue to reflect on and share process learning and insights that emerge throughout this phase of CfE in close collaboration with the eight funded organisations and their communities. This work is deeply relational and grounded in co-creation, and we are committed to ensuring that any learning shared reflects the voices, leadership, and priorities of those we work alongside.",
"We want to express our deep gratitude to the WCCI team for their openness, insight, and generous welcome during our visit. Their reflections and leadership continue to shape our own learning.",
"As Learning Partners, we’re committed to continuing to share what we learn about how participatory, community-led, and embedded approaches to knowledge exchange take shape in different contexts. Over the next two years, we’ll be collaborating with project teams to share emergent reflections and insights as learning evolves. We’ll also be working with partners at Wellcome Trust and Development Dynamics to help facilitate open, collaborative exchange with others committed to this work. We invite you to walk with us; follow our journey, share your reflections, and help shape a collective vision for more just and inclusive knowledge practices."
]
}
]
},
{
"id": "visioning-and-realising-centres-for-exchange-in-health-research",
"title": "Visioning and realising Centres for Exchange in health research",
"slug": "visioning-and-realising-centres-for-exchange-in-health-research",
"author": "Clémence Petit-Perrot and Lindsey Reynolds",
"date": "2024-11-01",
"categories": [
"global-health",
"knowledge-exchange",
"community-engagement",
"health-research",
"equity"
],
"featured_image": "/images/blog/visioning-and-realising-centres-for-exchange-in-health-research-1.jpg",
"images": [
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"medium_url": "https://medium.com/@PivotCollective/visioning-and-realising-centres-for-exchange-in-health-research-21da18c9a211",
"sections": [
{
"heading": null,
"paragraphs": [
"In the sixth blog in our series on the Centres for Exchange project, we introduce the emergent framework for realising a vision of equitable and inclusive knowledge communities and the open exchange of diverse forms of knowledge in health research — and beyond.",
"The first phase of the Centres for Exchange (CfE) project, conceived by Wellcome and undertaken by a collaborative team* led by Pivot Collective, is coming to an end. Over the last 18 months, the project has been exploring how we might move towards more effective and meaningful routes for diverse communities to participate equitably in health research. To move towards a co-created vision of pathways for change, the team undertook a global landscaping and consultation process, followed by an ideation and co-design phase to create a framework and pathways for implementation to guide the development of actual CfEs in the next phase of the project.",
"Our last blog concluded a series of posts which took us from South Africa, to India and Latin America to explore the perspectives of engaged researchers and engagement practitioners working in each of these geographies on equity and inclusion in health research. Following our place-based landscaping and learning, our collaborative, multi-country team worked to draw together diverse ideas and insights to start drawing the contours of a cohesive yet flexible concept for the Centres for Exchange. We coordinated a series of internal co-design workshops to develop a set of core principles, a vision, goals, and a conceptual framework for the Centres for Exchange project. These were sense-checked and refined through engagement with key stakeholders and through participatory workshops at Wellcome. Throughout this first phase of the project, our collaborative team has also hosted public sharing events to sense check the evolving concept with a broader range of stakeholders and partners working involved in engaged research.",
"At this stage, we are excited to share this vision and framework with broader stakeholders and publics to engage in an open dialogue and foster a broader movement for change. To this end, we have drawn together our learning and vision into a public learning repository, which you can explore more deeply on our new website. The website is intended as a living repository of insights and learning from the Centres for Exchange initiative.",
"In the site’s visual language, we have chosen the metaphor of an ecosystem to describe the development of the Centres for Exchange concept, drawing its roots from rich underground springs of embedded knowledge to reveal diverse, interconnected forests of learning and pathways for growth and change. The website will also be available in Spanish and Portuguese very soon.",
"Below we highlight key elements of the vision and strategic priorities, as well as offering some updates on the way forward for this collaborative initiative. For the fuller picture, be sure to check out the online repository."
]
},
{
"heading": "Our vision for the Centres for Exchange",
"paragraphs": [
"At the core of our collective vision is a commitment to reducing health inequities and promoting collective health through the advancement of equitable and inclusive knowledge communities and the open exchange of diverse forms of knowledge.",
"This is articulated in three intersecting goals:"
]
},
{
"heading": "An imagined architecture",
"paragraphs": [
"We envision the Centres for Exchange as a network of place and practice-based initiatives (which we call “knowledge collectives”), led from and geographically located in the Global South, that aim to foster innovation in equitable and inclusive health research and knowledge exchange and to realise principles of equity, inclusion and care in health research through their approach, methodologies and daily activities. The collectives will serve to foster health research projects and products that emerge from, resonate with, and create meaningful impact for the communities they serve. Working alongside these place-based knowledge collectives, we recognise the value of fostering a learning network, also led from the Global South, that promotes collaborative learning in wider communities of practice and acts as a support structure for the activities of the place-based collectives. The influencing power of the learning network could also enable work towards broader systems change in the research ecosystem."
]
},
{
"heading": "Pathways for change",
"paragraphs": [
"From our landscaping and consultation work, some recurrent pathways to operationalise the Centres for Exchange have emerged. These strategies encompass possible areas of practice to bring the principles and vision of the Centres for Exchange concept to life, both through the actions of place-based knowledge collectives and the collaborative work of the broader learning network. In our framework, we clustered these strategies and their potential related activities under three main domains — research and learning, organisational transformation and knowledge exchange and influencing. In the learning repository, we draw out a series of strategies under each domain, and ground each in models of practices and potential activities. We see these strategies as a fluid array of potential pathways for change that move toward the broader vision and goals of the Centres for Exchange, rather than a prescriptive list. We imagine that each learning collective or network would assess which strategies are the most relevant and urgent for them, based on their own understanding and experiences of the research ecosystem and broader sociopolitical context where they operate — and craft their own pathways for change."
]
},
{
"heading": "The way forward",
"paragraphs": [
"Drawing from the learning from the initial scoping and design phase, the project is now transitioning to a “proof of concept” phase. Over the next 24 months, Wellcome will offer seed funding to a select group of organisations whose work already exemplifies the principles and strategies of the CfE framework. The first set of knowledge collectives will be located in India, Kenya, and South Africa, with a vision to expand beyond these geographies as the project grows.",
"This phase will also see the development of a broader cross-project learning network aimed at synthesising evidence and learning and informing Wellcome’s longer term strategy for the Centres for Exchange.",
"Learning with you",
"In addition to the plans for phase 2 (funded by Wellcome), our collective envisions many possible pathways for the growth of this initiative and how it might be brought to life in practice.",
"We’re excited to hear from you about your vision for where this initiative might travel and grow. Please add your thoughts to the perspectives shared on our learning repository, and contact us to share your ideas and sign up to our mailing list for project updates.",
"*The Centres for Exchange project was conceived by the Wellcome Community Engagement Team, who commissioned Pivot Collective Consulting (South Africa) to lead a multi-country research and co-design process in partnership with colleagues from Praxis (India), Restless Development (Zimbabwe), Eh!woza (South Africa), Vocal (UK), and Fiocruz (Brazil). Our collaborative team included Lindsey Reynolds, Clémence Petit-Perrot, Tasha Koch, Gustavo Matta, Pradeep Narayanan, Sarah Iqbal, Bella Starling, Adalton Fonseca, Denise Pimenta, Mariana Sebastião, Raíza Tourinho, and Renata Cortez-Gomez. We’ve worked in close partnership with Wellcome colleagues Haidee Bell, Duncan Collins-Adams, Gemma O’Brian, Ruwa Mahdi, Teresa Cisneros, and Dana Sharkas as well as with Jo Zaremba."
]
}
]
},
{
"id": "decolonisation-as-a-pathway-to-rebuild-health-research-reflections-from-latin-am",
"title": "Decolonisation as a pathway to rebuild health research — Reflections from Latin America",
"slug": "decolonisation-as-a-pathway-to-rebuild-health-research-reflections-from-latin-am",
"author": "Adalton Fonseca, Denise Pimenta, Mariana Sebastião, Raíza Tourinho, Renata Cortez-Gómez, and Gustavo Matta",
"date": "2023-12-14",
"categories": [
"decolonization",
"participation",
"latin-america",
"engagement",
"health-research"
],
"featured_image": "/images/blog/decolonisation-as-a-pathway-to-rebuild-health-research-reflections-from-latin-am-1.jpg",
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],
"medium_url": "https://medium.com/@PivotCollective/decolonisation-as-a-pathway-to-rebuild-health-research-reflections-from-latin-america-02ac4a4a6f9b",
"sections": [
{
"heading": "Decolonisation as a pathway to rebuild health research — Reflections from Latin America",
"paragraphs": [
"“How do we produce knowledge in ways that include diverse voices and perspectives? How do we deal with centuries of exclusions and health inequalities that mean some voices have been systematically marginalized in academic research? What are the solutions and best practices implemented by researchers and communities in these processes? And what can we learn?”",
"These questions sparked enlightening discussions with researchers, activists, and community representatives from Latin America, engaged as part of the collaborative Centres for Exchange project, commissioned by the Wellcome Trust in partnership with Pivot Collective. The overall aim of the project is to support more effective and meaningful routes for diverse communities to participate equitably in research. In the piece below, we share a synthesis of the preliminary results and reflections emerging from a review of Latin American literature, in-depth interviews, and workshops carried out with community engagement experts from Brazil and Mexico.",
"One of the most unequal regions in the world, Latin America is marked by deep and violent inequalities that were historically and strategically constructed during the European colonization and the resultant unequal land distribution, enslavement of African people, and the genocide of indigenous people. Throughout the centuries, poverty and social inequalities resulting from classism, racism, and sexism have been reflected and reinforced in various aspects of the lives of Latin American people. During the 20th century, developmental economic models introduced new social inequalities that accentuated the health inequities of the most vulnerable populations. Countries like Brazil, Chile and Argentina faced long periods of dictatorship, while others (like Mexico) went through decades of authoritarian regimes with the suppression of civil liberties and violations of human rights.",
"Precarious housing conditions, hunger, preventable diseases, and violence are some of the consequences that are still evident today. Disparities in the region continue to be closely tied to skin colour or ethnicity — whites, blacks, and indigenous people are at significantly different levels in the social hierarchy. In Mexico, for instance, 70% of the indigenous population lives in poverty, compared to 40% of the non-indigenous population. In São Paulo, Brazil, life expectancy in one of the largest favelas, Paraisópolis, is 10 years less than for those living in Morumbi, a wealthy neighborhood adjacent to this community. Access to education and knowledge production by research institutions has been restricted to a wealthier portion of the population and framed for a Global North audience.",
"At the same time, popular resistance and the human rights movements played crucial roles in transitioning to more democratic regimes in many places. Social movements and non-governmental organizations have been (and still are) key actors in the fight for equity, social justice, and inclusion in various social spheres. In health research, Latin America has been developing strategies to overcome the dismal consequences of colonization and working to redress injustices, making efforts to shake them and to generate transformative experiences through collaborative work between researchers and society, mainly local communities. The now mainstream concept of decolonization and its experience were brought to life in Latin America by authors like Aníbal Quijano, Maria Lugones, Walter Mignolo, Gloria Anzaldúa, Paulo Freire, Milton Santos, Fals Borda, and others.",
"Since 1960, the fields of Latin American Social Medicine and Collective Health emerged to denounce the limitations of scientific medicine, to explain inequalities in health-disease profiles and to transform the health conditions of populations. These epistemological and political movements in defense of the right to health hold as their central element the interdisciplinarity of knowledge, practices, and policies — and operationalise social participation as a fundamental tool in health research and in the health system.",
"The need to link theory with practice encouraged supporters of these movements to mobilize different sectors of society, including social movements, to improve their health conditions. In Brazil, in response to these calls for change, the Federal Constitution of 1988 guaranteed social participation in the management of government policies and programs, formalizing effective social participation in different state levels.",
"In summary, an understanding of the historical processes of decolonisation and democratization is central to Latin American critical epistemologies, practices, and social and political struggles. These movements have shaped scientific knowledge production in the region in profound ways."
]
},
{
"heading": "“The ‘balacobaco’ of participation”",
"paragraphs": [
"In Latin America, there are many experiences related to social participation in research and in the formulation of public policies. Drawing from these diverse experiences, the ‘balacobaco’ (or uniquely beautiful and disruptive element) of Latin American approaches to social participation in research starts to emerge. Fundamental to this approach is a commitment to truly context-driven, collaborative, and indigenous forms of knowledge production.",
"For this project, we documented five models of practice that evoke this uniquely Latin American ‘balacobaco’. These include two case studies from indigenous women’s organizations in Mexico. Through collaborative research, they have come to understand how gender-based violence is experienced at the local level, and how it can be resolved. Their participation has occurred in most of the steps of the research, from the design of a shared agenda, through data collection to publication.",
"We also documented three case studies in Brazil, two based on institutional cooperations between the research institute Fiocruz and communities in Rio de Janeiro, and one about the oldest active HIV/AIDS NGO (ABIA) in Brazil. Their experiences reveal the importance of fostering more effective modalities for working in genuine collaboration with communities often ignored by researchers and health authorities. Indigenous women, vulnerable populations, and people living in other territories of exclusion have their own embedded understandings of their contexts and health issues, as well as of what constitutes ethical research. The researchers involved in the models of practices we’ve studied have worked to build critical participatory approaches and initiatives of mutual and decolonial exchanges, inspired by the epistemological and political traditions of Latin American Social Medicine.",
"Following the case studies work, we held a participatory workshop with representatives from the organizations we studied as well as other researchers from Brazil and Mexico. Workshop participants raised many questions about how and for whom science is produced. These provocations led to a discussion that emphasized the need for ongoing dialogue with diverse communities as an essential process to understand how science can address urgent issues and needs in a particular territory.",
"“It is necessary to listen to and see the people with whom we want to relate. This is because, in general, science tends to impose verticality that compromises participation in its political and full sense. The participatory science we need is the one that builds its problem together with the populations it wants to intervene.” (Researcher and activist)",
"“We need to start building our research problems in continuous dialogue with the social actors of the territory where we work…and we need to listen fully to enable the participation of all social actors. Consultation regarding objectives, methodology, continuous consultation on all steps we take, including results…” (Researcher)",
"At the same time, there was a consensus among the group that investments in social participation processes that allow collaborative work between researchers and communities are permeated with tensions, especially in decision-making moments. Although the dialogue between the parties allows for this collective mobilization for co-production, it is important not to lose sight of the fact that this type of articulation is essentially an uncomfortable movement that takes us out of the status quo. More than that, it requires a willingness to share power over the project’s progress with participants.",
"Participation, on a horizontal basis, brings the idea of doing it together. This means assuming responsibility, costs, and enjoying the benefits equally. (Researcher and activist)",
"‘The ‘balacobaco’ of participation, I would say, is wanting to see what will happen outside of dirigisme” (or state control), concluded one of the participants, who is a researcher and activist. In his reflection, he was referring to the attitude of the participants in the process of collaborative knowledge production based on democratic values and communities taking control to achieve goals and meet their needs.",
"In Latin American research, the decolonial perspective is often seen to be an epistemological and political lens that must be summoned to produce truly transformative understandings of a given social reality. This concept is crucial in this context because it challenges historical structures of cultural domination that have shaped the relationships between researchers and communities. The search for participatory and collaborative approaches in research not only recognizes, but also values of the local knowledge and perspectives, promoting a more equitable and just narrative in knowledge production.",
"“We come from a culture where the voice of the people, the voice of those from the periphery, is frequently not considered. But then I ask you, who knows where it pinches? Only the user knows where it pinches.” (Community representative)",
"“It is necessary to recognize the knowledge of the organic intellectuals — leaders who have a lot of knowledge, even if they do not have the title. That is key, as a place of dignity, of recognition of their work, of participation in decision-making, of dialogue outward public, dissemination of the results.” (Researcher and activist)"
]
},
{
"heading": "Community as a place of resistance",
"paragraphs": [
"“The community as a territory is a place of resistance and knowledge.” This statement, shared by one of the workshop participants, points at the historical silencing of vulnerable people from the process of scientific knowledge production and how it has been detrimental to more consistent social progress.",
"Firstly, it is necessary to relinquish the meaning of the concept of territory as a delimited geographic area. In the definition of the Brazilian geographer Milton Santos, it expands to encompass social, cultural, and, above all, political dynamics in a particular space. Thus, for communities, territory is a living place, a space of struggles, conquests, and identities. Secondly, specific knowledge is produced within particular territories to address problems that emerge in this particular place — and that often go unaddressed by science or the government. In this sense, a community representative who participated in our workshop argued that understanding how grassroots organizations function in terms of being places of support and development is crucial for those seeking to engage in collaborative knowledge production.",
"In this regard, communities are places of resistance in terms of how they perceive their participation in scientific production, especially in health. For the workshop participants, communities should be collaborators involved in all stages of the scientific process from setting a shared agenda, collecting, and analyzing data, to writing the reports of the research."
]
},
{
"heading": "The activist-researcher",
"paragraphs": [
"It is not an easy task to adopt a decolonial approach in scientific production for those who were trained in a model influenced by colonialism and the positivist view that seeks to exclude subjectivities, and consequently, the experience of historically vulnerable and silenced groups. In this traditional scientific approach, researchers are called to be objective and to distance themselves from the phenomena they analyze, relying instead on data and formal academic literature. Social participation is thus restricted to giving informed consent, answering questionnaires, interviews, and clinical tests, that is to say, as being an informant.",
"Workshop participants described how they had worked to disrupt this model, resulting in the production of knowledge closer to the interests and needs of a particular population, often referring to themselves as ‘activists researchers’. Action research produced by the activist-researcher seeks to transcend traditional boundaries between researchers and those being researched, aiming for a more collaborative, participatory, politically committed, and capable of provoking social change in its surroundings. One community representative explained:",
"“When we talk about action research, we are talking about empiricism, about experience. So, we talk about community involvement when we talk about community participation, experience, life, knowledge, stories also need to be part of the scope of this research.”",
"Methodologically, the activist-researcher is called to take positions that challenge hierarchical relationships for the shared construction of knowledge.",
"The activist-researcher has an ethical commitment to producing knowledge that improves people’s lives, not just offering an understanding or interpretation of reality that aims to further science. This constitutes an important shift in how and why researchers do science, and in what is considered ‘good’ scientific research.",
"For me today, it is nonsense to publish in the best scientific journals, in a language that society does not understand. It is necessary to align our academic interests with the interests of the territory.” (Researcher)",
"This implies aligning research products with the needs of the communities, sometimes producing a short film or infographics instead of an article or a book. It is also important to share research results with them, using communication strategies that allow them to understand.",
"This activism implies going beyond the formal, delimited commitment to community engagement often demanded by research funders, to truly engage with the needs and demands of communities.",
"“The closing of the report is where my obligation to the funder ends… There is no longer funding (but then) how can I take this to the most local levels? How do I transform this into a simpler language? (The communities expressed) “everything is fine, but we want that in simple terms, that is, we want a workshop to understand that”. It has involved three workshops, two virtual and one in person… We require help from the people who do communication, from the people who manage the new technology, also time and resources, which are usually not contemplated in the projects. Because the project ends when we deliver the report and this (what happens after delivering the report) for the communities, from my perspective, is the most relevant”. (Researcher and activist)",
"Highlighting the necessity of a new model of science, rethinking the dynamics of power, one of the researchers suggested:",
"“Nowadays, we need an engaged researcher, who shares knowledge and ‘fique de cócoras’ (squats down) to hear the others”. (Researcher)"
]
},
{
"heading": "Learning from Brazil and Mexico’s experiences to envision a new path",
"paragraphs": [
"After unpacking the key characteristics and dynamics framing social participation and community engagement across Latin America, workshop participants started to envision what the key components of a new ‘Centre for Exchange’ could be.",
"The participants in our workshops agree that it is necessary to create an infrastructure that favors community participation. However, this does not necessarily mean “creating a new research center.” Instead, what is needed is to change research practices. The verticality that characterizes biomedical research, where access to communities is only sought to collect samples or to have informants, is a challenge to overcome. Participants reflected that It is essential to change researchers’ minds about who possesses and produces knowledge:",
"“Dialogue about the construction of knowledge is also (a form of) scientific literacy to deconstruct narratives of misinformation. When individuals participate in the debate, things happen differently”. (Researcher and activist)",
"Workshop participants also stressed the importance of infrastructure: a virtual-only center can prevent people who do not have remote access from participating, or can limit the role of many to that of spectators. It is important that a ‘Centre for Exchange’ has a physical component that facilitates face-to-face interactions and gets closer to the territories. The infrastructure must also guarantee that people with disabilities as well as those who speak different languages can participate equitably.",
"Workshop participants agreed that while research can help to create public policies that improve people’s living conditions, collaborative methodologies and intersectoral approaches are fundamental to this goal. The articulation of research with social movements is essential to expand their capacity to participate in decision-making and public health policies, especially in socially and environmentally vulnerable territories.",
"*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 from Mexico."
]
}
]
},
{
"id": "promoting-participation-and-collaboration-of-communities-in-health-research-in-s",
"title": "Promoting participation and collaboration of communities in health research in South Africa",
"slug": "promoting-participation-and-collaboration-of-communities-in-health-research-in-s",
"author": "Tasha Koch, Nabeel Petersen, and Lindsey Reynolds",
"date": "2023-12-05",
"categories": [],
"featured_image": "/images/blog/promoting-participation-and-collaboration-of-communities-in-health-research-in-s-1.jpg",
"images": [
"/images/blog/promoting-participation-and-collaboration-of-communities-in-health-research-in-s-1.jpg"
],
"medium_url": "https://medium.com/@PivotCollective/promoting-participation-and-collaboration-of-communities-in-health-research-in-south-africa-fc758a3fb203",
"sections": [
{
"heading": "Promoting participation and collaboration of communities in health research in South Africa: Towards equity and co-creation",
"paragraphs": [
"Recently, we shared key insights from the landscaping phase of the Centres for Exchange project, which aims to foster more equitable and collaborative forms of knowledge exchange in health research. That post was followed by a piece from India, the first in our regional series that dives into reflections from practitioners working in each of the priority geographies of the project. In this post from South Africa, we explore current challenges of community engagement in health research as well as existing opportunities to create more equitable structures for the exchange of knowledge in research currently emerging in the country.",
"South Africa’s complex history of colonial and apartheid rule systematically excluded the majority of the population from equal membership in society and prevented people from receiving adequate and dignified healthcare. These injustices contributed to the emergence of a strong civil society sector, which was a cornerstone of South Africa’s transition to democracy in 1994 and played a vital role in addressing inequalities within healthcare.",
"One of the most significant and well-known health-related social movements formed in response to the HIV/AIDS crisis. In the late 1990s and early 2000s, South Africa faced one of the most severe HIV/AIDS epidemics in the world, worsened by a slow government response marred by denialism. Civil society organisations, most notably the Treatment Action Campaign, publicly demanded (and eventually obtained) free access to antiretroviral treatment for all people living with HIV in the country and worked to destigmatize the disease. Building on this tradition of advocacy, South African civil society organisations continue to work to address health inequalities. Very recently, for instance, local civil society groups (including the Health Justice Initiative and the Rural Health Advocacy Project) together with international support from novelist John Green successfully advocated for Johnson & Johnson to remove patent restrictions on the manufacture of Bedaquiline, one of the new treatments for drug-resistant tuberculosis (TB).",
"In addition to its strong civil society, South Africa boasts a robust health research infrastructure composed of leading universities, research institutes, and public health organisations. The country’s expertise extends across various fields, including HIV/AIDS, TB, and emerging infectious diseases. The country’s research sector led the world in the discovery of COVID-19 variants and also implemented several large-scale clinical trials of COVID-19 vaccines, underscoring the significant contribution of its high-impact data systems, clinical research infrastructure, and policy advice to global health initiatives.",
"Despite the strength of its health research sector, South Africa has faced significant challenges in ensuring equitable access to biomedical technologies, even those it has helped to develop. During the COVID-19 pandemic, for instance, the country was unable to procure vaccines efficiently, underscoring a wider and deeper inequality where wealthy countries monopolised initial vaccine supplies. This disparity highlighted not only economic inequalities but also the underlying power dynamics in global health.",
"Against this backdrop, our team members from South Africa sought to understand the current landscape of community engagement, participation, and knowledge exchange in health research in the country. Our work forms part of the broader Centres for Exchange (CfE) project, a collaborative learning and design project commissioned by the Wellcome Trust. Our international consortium, working across South Africa, India, Brazil, Mexico and Kenya, has conducted a series of key informant interviews with stakeholders at a selection of organisations with strong capacity and experience in both research-related community engagement and grassroots work, to explore models to inform the CfE work.",
"Identified case studies in South Africa included organisations working in health research, the climate change sector, and the social justice space. One of the models explored in the case studies is centred on a physical infrastructure within a South African township that facilitates intersectoral collaboration while providing highly accessible facilities to people living in the surrounding community. Other models focus on the development of community representative structures within large-scale clinical health research programmes. Another case study explored how youth and other affected communities could advocate for better responses to climate change. A further case focussed on formalising intersectional research to understand how power operates and influences healthcare in South Africa.",
"After case study investigations, a participatory workshop was hosted with representatives from the case study organisations as well as others working in the sector to expand on findings. The insights described below are drawn from both case studies and the place-based workshop and participants in both sets of activities included organisational heads, research leads and community engagement practitioners. In the way participants defined terms, a large proportion of people at the workshop used the term “community engagement” to describe their work, using the concept broadly to encompass a range of activities, outcomes, and impacts that include community consultation, communication, participation, and ownership.",
"Why do people work in community engagement: Responsibility to effect change",
"For many participants, there was a strong sense that the importance of engaging communities in health research has been increasingly recognised, with increased value placed on the critical role community engagement plays in the research lifecycle. As one organisational lead explained:",
"“We cannot do the work we do without communities….The relationships I want to try and create are win-win…it works both ways…[we] bring the community along and [we] feel like they value the relationship they have with us [too]. It’s a bidirectional flow.”",
"Interestingly, participants whose work involves close engagement with diverse communities involved in research described a strong sense of personal responsibility for embarking on their work, describing a passionate personal drive to effect social change.",
"Many people described themselves as working in the space between research and engagement, serving as bridges or connectors between researchers and communities:",
"“I represent both an organisation that does research in infectious diseases and represent the community we work in. I am a person who is curious and wants to know more, I can be the beacon of voice, the intermediary.”",
"Several participants highlighted how their strong capacity and experience in community engagement were related to South Africa’s history of social movements. Despite these powerful movements, participants were cognisant of the significant difficulties and challenges that must be overcome to make community engagement work more meaningful and impactful. A key debate that emerged during the workshop focused on whether genuine co-creation is currently, or will ever be, possible in the context of health research in South Africa, with one participant reflecting:",
"“I’m uncomfortable with the word co-creation. When you say you co-create it means from the conception, from the conceptualisation of a protocol. At the moment we are not there! We are consulting based on the [study] protocol already written up. It never really starts with talking with the community right from the very start. We are not even close in South Africa!”",
"A health researcher reflected: “Not one complaint at community level has been addressed at protocol level. Once a [research] protocol is written to try and amend that is near impossible.” Another participant, reflecting on where communities sit on the ladder of participation, suggested that communities are involved at the consultation level at best.",
"Most participants suggested that there should be greater inclusion of communities in research protocol development from the start, with some examples being put forward of where this has been recently successful (e.g.Matrix4Prevention). Others raised critical questions about the practical feasibility and usefulness of this in the context of complex research, suggesting that not all questions require community input:",
"“There are some doors that I’m okay that are closed because of the nitty gritty. Maybe I’m a community member who hasn’t been affected enough by a problem to want to be consulted. Sometimes we open ourselves up to more problems than there are [by too much consultation].”",
"“In a family, there must be a mother and father and they must make sure their decisions must be for the betterment of the child. We have different levels of literacy, of access. As a child, you need to get what you need from the parent. That is the same for research.”",
"Power sharing and structural challenges",
"In addition to the rich and generative debate around the “nitty gritty” of the practice of community engagement in South Africa, participants spoke about structural barriers to true equity and power-sharing in this sector. Local systemic issues, such as under-resourced public health systems and infrastructure gaps, poverty, unemployment, and corruption disproportionately affect communities that are often those involved in research.",
"These issues also posed a challenge for engagement workers, who often felt a tension between meeting the needs of research and responding to the acute needs of communities on the ground. “Most research [is] done in disadvantaged communities” one participant pointed out, “yet there are no resources for these disadvantaged communities.” Another added: “You can’t just answer research questions and ignore the health of communities on the ground.”",
"Alongside local socio-political issues, global power structures were highlighted as major and often painful barriers to effective participation and inclusion. Participants reflected on how these issues were made visible during the COVID-19 pandemic. Participants spoke about how injustices in the system had impacted them personally as health researchers who had been involved in COVID-19 vaccine trials. One participant, a health researcher, described how she had chosen to get involved in COVID-19 vaccine research and to recruit community members: “Sometimes we’ve taken part in studies so that South Africa isn’t in the back row for vaccines.” When people in South Africa were not given access to the vaccines they had helped to develop, she expressed that she had felt a strong sense of injustice and moral betrayal from the global health establishment.",
"While COVID-19 vaccines are one of the most visible and pertinent examples, participants expressed distress about how many other interventions had been tested on South African communities but had not been made accessible to these populations.",
"“Who OWNS the research? Is it owned by the community? How, if they’re not making decisions? Communities give their lives and blood to make sure that future generations have a better life. When you go to a community, a normal person, who was part of the study, where is the vagina ring? We haven’t taken people with us enough.”",
"The way forward: keep on pushing together!",
"Despite these injustices and inequities, there was a strong sentiment from the collective that they must continue to push for change and progress.",
"“Who has the power to change things? South Africa is a very capacitated country, with so much research infrastructure. We need a galvanised approach for how research is going to happen.”",
"Collaborative knowledge production and working to break down the boundaries of “us and them” between communities, community engagement workers, and researchers emerged as a strong theme for moving forward positively. This would involve, in the words of one participant, “appreciating, valuing, nurturing epistemic diversity, a diversity of perspectives, a diversity of knowledges.” Participants highlighted the need for a space for researchers to be equipped with the skills, contextual understanding, and expertise to conduct community engagement equitably.",
"There was a strong emphasis on a physical place that can bring together different groups and organisations working in communities to learn from each other and collectively propel change as potentially transformational for this space. Participants agreed on the importance of “hosting and funding a single space, to exchange and shape the research agenda together.” With the potential to shape the global agenda advocate for greater local investment, and potentially allow close participation and involvement of funders: “Funders should come and see what is happening on the ground”.",
"Participants also recommended streamlined administrative policies and resource mobilisation for responsive community engagement. “Policies that control and limit access to what we want to do should be amended.”",
"Finally, to make power shifting possible, participants emphasised the importance of fostering research leaders who have commitments to co-ownership and equity at their core. There was a strong focus on ensuring that community engagement is guided by a core set of values that include a commitment to human rights, capacity building, transformation, and an ethos of collaboration.",
"The Centres for Exchange project, commissioned by the Wellcome Trust’s community engagement team, is led by Lindsey Reynolds and Clémence 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."
]
}
]
},
{
"id": "beyond-the-status-quo-reimagining-knowledge-exchange-in-health-research-perspect",
"title": "Beyond the status quo: Reimagining Knowledge Exchange in Health Research — Perspectives from India",
"slug": "beyond-the-status-quo-reimagining-knowledge-exchange-in-health-research-perspect",
"author": "Sarah Hyder Iqbal and Pradeep Narayanan",
"date": "2023-11-21",
"categories": [
"india",
"health-research",
"community-engagement",
"transformation",
"participation"
],
"featured_image": "/images/blog/beyond-the-status-quo-reimagining-knowledge-exchange-in-health-research-perspect-1.jpg",
"images": [
"/images/blog/beyond-the-status-quo-reimagining-knowledge-exchange-in-health-research-perspect-1.jpg"
],
"medium_url": "https://medium.com/@PivotCollective/beyond-the-status-quo-reimagining-knowledge-exchange-in-health-research-a5d7050d552b",
"sections": [
{
"heading": "Beyond the status quo: Reimagining Knowledge Exchange in Health Research — Perspectives from India",
"paragraphs": [
"In last week’s post, we shared some key findings of the landscaping phase of the Centres for Exchange project. This post from India is the first of a series describing the in-depth and contextually rich reflections from practitioners working in the priorities geographies of the project. It intends to help rethink the current model of knowledge exchange in an constantly evolving health research landscape, to develop one that promotes more reciprocal and equitable collaborations between researchers and communities.",
"India grapples with a significant and multifaceted health burden, characterised by a broad spectrum of health challenges stemming from social inequalities and rapid economic growth. The country’s health funding structure operates at both central and state government levels, with states predominantly shouldering responsibilities for public health and sanitation, including the management of healthcare facilities and hospitals. Despite India’s long history of health research dating back to 1911, when the Indian Research Fund Association, the precursor of the Indian Council of Medical Research (ICMR), was established, a comprehensive policy to guide decision-making did not materialise until the ICMR formulated a Health Research Policy in 2007. Presently, India’s health research landscape is diverse, featuring numerous stakeholders, including the public and private sectors, autonomous organisations, NGOs, as well as bilateral and multinational agencies.",
"However it’s worth mentioning here that India’s healthcare budget, which stands at a mere 2% of the GDP, pales in comparison to say the 6% allocated in China and the substantial 9% in Brazil which is close to the global average health expenditure. This insufficiency becomes more pronounced when one considers the misalignment between India’s disease burden and health research funding allocation (WHO recommended allocation for developing countries is 0.05–0.1%). Health research currently receives a meagre 0.01% of the GDP through the Department of Health Research and as part of overall healthcare budget, highlighting the urgent need for a more substantial and targeted investment in research to meet the nation’s evolving and unique health challenges.",
"While fair progress has been achieved in healthcare and research in the last 75 years, India continues to grapple with deeply entrenched disparities in healthcare access. These disparities prompted the establishment of the nation-wide People’s Health Movement in 2001, locally known as ‘Jan Swasthya Abhiyan’ that eventually grew to become a global movement influencing healthcare advocacy in other Global South regions. This movement fervently advocates for ‘Health For All’ and strives to enshrine the Right to Health and Health Care as fundamental human rights among other aims. In response to these challenges, grassroots movements such as the Public Health Resource Network (PHRN) have also emerged to address health inequities and advocate for community-focused, participatory approaches in healthcare and research.",
"These movements underscore the pressing need to intentionally and meaningfully integrate the diverse and evolving needs of communities, particularly those marginalised, in designing health and research agendas. They also highlight the need to involve diverse communities as owners and leaders in health research.",
"Furthermore, there is ample evidence to support why community needs, aspirations, and expertise should be included in health research to improve its quality and impact, extending beyond its use in adherence to ethical standards. Despite this, the absence of robust support and recognition for community engagement in research, particularly by mainstream funding bodies in India, is concerning. This necessitates a critical rethinking of our current approach to knowledge production, exchange and use in health as well as the structures and mechanisms that enable them."
]
},
{
"heading": "Reimagining Knowledge Exchange",
"paragraphs": [
"As part of the current ‘Centres for Exchange’ project commissioned by the Wellcome Trust, spanning India, Brazil, Mexico, South Africa, Kenya, our collaborative team* aims to rethink the current model of knowledge exchange in health research to develop one that promotes reciprocal and equitable researcher and community collaborations. While we recognise that the nature of such an engagement would vary depending on the type of health research undertaken — from lab-based biomedical research to more applied and community-facing research such as clinical trials, implementation research, and so on, as well as contextual realities, the project aims to cohere around a shared set of principles and practices.",
"To begin with, our project team examined existing models of knowledge exchange across our focus countries through a rapid literature review and key informant interviews. In India, we explored forms of knowledge exchange spanning across clinical service and research organisations, community-led centres, and knowledge exchange platforms.",
"Hegemonic knowledge centres",
"However, as we embark on this reimagining journey, it is important to recognise that prominent ‘Centre(s) for Exchange’ already exist, led by influential universities, publishers, funders, governments, and corporations. Within this network, prominent individuals engage in research, share knowledge at conferences, mutually support interests, establish collaborations, offer grants and awards, and promote a collective agenda. Many of us are unconsciously part of this hegemonic ‘research mafia’ through our affiliations, our publications, and our networks. In this environment, the dominant voices tend to be upper-class, urban-educated, dominant-caste, able-bodied men, who typically participate in knowledge production and sharing through a projectised funding approach. While prominent and influential, this current model of knowledge exchange lacks transparency and accountability and excludes many forms of knowledge.",
"Therefore, the concept of a ‘Centre of Exchange’ should not be approached with a blank slate. It must recognise the presence of the aforementioned elements and complex systems already in place. Additionally, the envisioned Centre should not aim to merely exist alongside the existing one; it should challenge the status quo, prioritising equity and fostering the emergence and space for alternative ideologies. A notable challenge lies in the fact that this influential network may not primarily focus on genuine scientific pursuits; instead, it may be driven by vested interests.",
"Charting Impact: Exploring Models of Knowledge Exchange",
"Following the rapid landscaping, we identified various models of knowledge exchange in practice that are at different stages of establishing and acknowledging the need for embedding community engagement and participation in health research, their location (rural vs urban), size, scale and reach, organisational structure (informal/grassroots vs established institutions) and so on. Most of the models studied in India are working with communities at the margins of society and healthcare. Some key characteristics most of these models shared were a) inclusion of lived experience and community engagement in all facets of research b) reflexivity in care and research practice c) evidence-based community engagement d) diversity of approaches ‘no-one-size-fits-all’ e) community engagement framework rooted in respect, trust, collaboration, and empowerment.",
"For instance, Banyan Academy of Leadership in Mental Health (BALM)’s initial work in rehabilitating homeless women with mental health issues has evolved into a healthcare model that empowers not only service users but also peers who have lived experiences, creating a peer-led framework that underpins their inclusive service and research programs.",
"In a similar vein, the journey of the mental health research organisation, Sangath, is noteworthy for their transformation from a local service-oriented entity in early 1980s to a science-focused organisation with global impact. Their history underscores the vital importance of not only evidence-based interventions but building institutional flexibility to evolve its knowledge production and exchange practices in order to improve the effectiveness of community-based scientific solutions.",
"A more ambitious new model of knowledge exchange was demonstrated in Planetary Health Interpretation Centre (PHIC), located in the tribal belt of Arunachal Pradesh’s Pakke Tiger Reserve. The centre aims to challenge the existing ‘Centres for Exchange’ models that are typically designed by and for the benefit of the research ecosystem. PHIC is managed by the forest officials from the local community and works at the challenging intersection of public health, wildlife conservation, and the environment, with the goal of fostering a community-owned space to accommodate collaborations that improve community well-being and education. The stories and insights from PHIC demonstrate the importance of breaking down barriers, fostering genuine connections, and embracing the diversity of thought and expertise that characterises the PHIC’s aspirational journey so far.",
"Framed around a fundamental questioning of “Who produces knowledge?” The Third Eye works both as an online platform, designing multiple kinds of reading-writing-listening-viewing experiences, and offline, conducting training and co-creating materials to change the status quo around knowledge production and sharing. Their Caseworker’s Dictionary of Violence is a great example of co-creating vocabulary with communities and nurturing community voices, challenging power dynamics, and inspiring transformation.",
"But the dominance of hegemonic ‘Centres for Exchange’ and a lack of funding for community engagement emerged as critical factors influencing the extent and quality of knowledge production and exchange in all of these models. While the research communities try to avoid being influenced by funders’ agendas, being a part of the globalised research and funding ecosystem is unavoidable as it is required for credibility, validation, and sustainability.",
"Unpacking fundamentals towards transformation",
"We further examined the principles and concepts underlying knowledge exchange and community engagement and developed a preliminary framework for a new form of ‘Centre for Exchange’ at a place-based workshop. The workshop brought together a diverse group of individuals from marginalised communities, academics, researchers, and activists working in global health, mental health policy, media production, behavioural change communication, social work, community development, research and innovation, bioethics, and public health.",
"Some of the insights derived from our case studies and interaction with key stakeholders underscore the imperative need to bring about institutional culture change as well as build capacities within both research and community engagement and for research and funding communities to adopt a more holistic outlook on health and well-being.",
"The discussions also underlined the need for embedding researchers within the community being researched and the critical role of funding timelines and mechanisms in shaping the course of relationship and trust-building in community engagement. Another provocation raised by participants from a marginalised community that is constantly under the research lens was that funders should be directly accountable to communities rather than relying on researchers as intermediaries.",
"The participants also shared that community engagement is often inadequately integrated within research contexts, often serving as a mere checkbox, resulting in an instrumental and extractive approach. For example, participants agreed that there is a willingness to engage with women and marginalised communities like Scheduled Castes (SCs) and Scheduled Tribes (STs) in healthcare and research, but without challenging the root issues of patriarchy and the caste system. This highlighted the need for a more nuanced, intersectional approach in research, moving beyond treating communities as mere respondents or tools for researchers and funders.",
"The participants also emphasised the value of a knowledge-sharing platform that transcends disciplinary boundaries and co-creating new vocabularies surrounding social and health issues with communities to build shared understanding and trust.",
"Another key area that came up often was the lack of evidence-based approaches to engaging communities and recognising the challenges in measuring community engagement, which is often perceived as intangible and unfundable.",
"Unlocking Knowledge Exchange",
"Building a new or reimagining an existing ‘Centre for Exchange’ will be no easy endeavour, given the deep-rooted complexities and diversity of historical, political, social and economic realities within the same country or region that significantly influence how communities, researchers and funders interact with each other and among themselves. But the current landscape of knowledge production and exchange clearly shows that it cannot be business as usual, lest we end up wasting resources and missing valuable opportunities for meaningful progress towards improving lives. We list here some key principles, ideas and provocations, that have so far emerged that we feel need to be not only recognised but also actively incorporated into our strategy for a comprehensive and effective approach to building a ‘Centre for Exchange’.",
"(1) Decentralise and share power",
"Our equity-passionate participants emphasised that a centre for knowledge exchange should not centralise the power of knowledge in the hands of a few; it should be decentralised. For instance, adopting a parliamentary model would ensure that decision-making power is vested in a diverse body representing various voices, while an executive team supports the implementation of these decisions. This separation of roles will help communities with greater power. Similarly, a G20 type model might allow different sub-centres to take turns in organising knowledge collation and dissemination efforts each year. This rotation system ensures prevention of centralisation and there will be a dynamic exchange of perspectives and expertise.",
"The decentered “Centre” should also not shy away from taking positions. However, the real challenge lies in allowing the Centre to evolve and represent alternative perspectives. The question that arises is who will navigate this evolution and how? Failing to answer this question could result in the creation of an autonomous centre that may not truly possess the power to challenge the existing powerful structures underlying health research.",
"(2) Deinstitutionalise current knowledge exchange domains",
"Another idea that has emerged in our study so far is to deinstitutionalise current knowledge exchange domains, which often tend to be controlled by a select few entities as mentioned earlier. This approach draws inspiration from the deinstitutionalisation model seen in mental health, where the goal is to ensure that care for mental health patients is not confined solely to clinical and hospital settings but is also extended to communities, families, and public spaces. Similarly, the Centre should aim to recognise that knowledge is not the exclusive domain of established institutions. Instead, knowledge exists in a multitude of spaces, and the Centre’s mission should be to enable and activate these diverse knowledge reservoirs. This approach doesn’t imply that institutions are inherently negative, but it emphasises the need to broaden the scope of knowledge exchange beyond traditional institutional boundaries.",
"(3) Recognise and celebrate diverse forms of knowledge and different views",
"The exchange of knowledge should not be reduced to a mere transactional process, where participation is enforced, or value judgments are attached to it. Knowledge itself is not apolitical; it can both discomfort and empower different people. The purpose of this space is not just to disseminate knowledge but also to facilitate dignified contestation. It’s important to recognise that contestation is not merely among individuals who are powerful and those at the margins. Often, the contestation revolves around differing visions and the means to achieve those visions. It’s a choice between focusing on growth or prioritising redistribution, between pursuing growth at any cost and addressing discrimination during the journey of growth.",
"So far, the insights derived from the models and discussions with key stakeholders in India highlight the need for current funding and research systems to better recognise the existing inequalities and power differentials that are impeding progress in health research, while also allowing space for new and disruptive ideologies to emerge. This is where we think a reimagined ‘Centre for Exchange’ can really make a difference.",
"*The Centres for Exchange project, commissioned by the Wellcome Trust’s community 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 Hyder Iqbal, Nabeel Petersen, and Renata Cortez-Gomez."
]
}
]
},
{
"id": "meaningful-routes-for-equitable-health-research-charting-a-way-forward",
"title": "Meaningful routes for equitable health research: charting a way forward",
"slug": "meaningful-routes-for-equitable-health-research-charting-a-way-forward",
"author": "Lindsey Reynolds & Clémence Petit-Perrot",
"date": "2023-11-15",
"categories": [
"decolonization",
"collaboration",
"research",
"global-health",
"community-engagement"
],
"featured_image": "/images/blog/meaningful-routes-for-equitable-health-research-charting-a-way-forward-1.jpg",
"images": [
"/images/blog/meaningful-routes-for-equitable-health-research-charting-a-way-forward-1.jpg"
],
"medium_url": "https://medium.com/@PivotCollective/meaningful-routes-for-equitable-health-research-charting-a-way-forward-c2f14ec15431",
"sections": [
{
"heading": null,
"paragraphs": [
"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."
]
},
{
"heading": "Exploring the ‘why’ and ‘for whom’ of engagement",
"paragraphs": [
"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)"
]
},
{
"heading": "Unpacking the terminology",
"paragraphs": [
"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."
]
},
{
"heading": "What stands in the way of meaningful and effective knowledge exchange?",
"paragraphs": [
"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)."
]
},
{
"heading": "What enables genuine knowledge exchange?",
"paragraphs": [
"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)."
]
},
{
"heading": "What change could look like: preliminary reflections",
"paragraphs": [
"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)"
]
},
{
"heading": "Project next steps",
"paragraphs": [
"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"
]
}
]
},
{
"id": "interrogating-knowledge-exchange-for-more-collaborative-research-an-invitation-t",
"title": "Interrogating knowledge exchange for more collaborative research: An invitation to join the conversation",
"slug": "interrogating-knowledge-exchange-for-more-collaborative-research-an-invitation-t",
"author": "Lindsey Reynolds and Clémence Petit-Perrot",
"date": "2023-05-15",
"categories": [
"research",
"community-engagement",
"global-health",
"inclusion",
"equity"
],
"featured_image": "/images/blog/interrogating-knowledge-exchange-for-more-collaborative-research-an-invitation-t-1.jpg",
"images": [
"/images/blog/interrogating-knowledge-exchange-for-more-collaborative-research-an-invitation-t-1.jpg"
],
"medium_url": "https://medium.com/@PivotCollective/interrogating-knowledge-exchange-for-more-collaborative-research-an-invitation-to-join-the-189ed1540eb8",
"sections": [
{
"heading": "Interrogating knowledge exchange for more collaborative research: An invitation to join the conversation",
"paragraphs": [
"A new design and learning initiative, commissioned by the Wellcome Trust, invites you to join a critical dialogue about participation and power in research, aimed at fostering more effective routes for more meaningful and equitable research collaborations.",
"What value comes from involving diverse communities in health research and sharing knowledge? How does power operate in different sites for knowledge production and exchange? How do we shift incentives and power structures in research to allow for more equitable collaboration between researchers and diverse communities?",
"These questions have been at the heart of critical conversations around participation, decolonisation, and epistemic justice for decades. They’ve also guided the transformative practices of community activists, participatory researchers, and grassroots practitioners in the global South. Prominent institutions and actors in the global North have recognised the necessity of shifting their practices to promote inclusion and equity in knowledge production in order to achieve better health and social outcomes for all. Wellcome Trust, the largest health research funder in the UK, has made a commitment that by 2031, all Wellcome-funded research will be inclusive in both design and practice, to help drive better science and more equitable solutions to the most urgent health challenges.",
"Despite this commitment, there is a lack of consensus of how to move towards these goals and achieve systemic and sustainable change. Diverse actors in different localities hold pieces of the puzzle, acquired through traditional modes of research as well as tacit “local” forms of knowledge, but these pieces have not been brought together to see the full picture — one that is complex and context-specific. At the same time, it’s necessary to acknowledge that these challenges are framed by the presence of long-standing, historically-shaped power inequalities between those positioned as knowledge producers and the many different communities represented in and affected by the forms of knowledge that are produced. Without radical change in these structures of power — including the systems that govern research funding, research practice, and the translation of knowledge — meaningful change is not possible.",
"The Pivot Collective is leading a collaborative project, commissioned by the Wellcome Trust, that aims to better understand knowledge exchange in health research and to design more effective and meaningful routes for communities to collaborate in research. This project aims to explore how we can build mutuality and capability in the relationship between researchers and communities, working to bring deeper understandings of the diversity of local contexts and values into the design and implementation of global frameworks and practices. We also aim to identify the potential role for Wellcome and other funders in supporting and/or resourcing this infrastructure — currently called ‘Centres for Exchange’ — building on existing assets and structures within communities. The ultimate goal of this project is to support communities to play a meaningful, inclusive and reciprocal role in the research ecosystem and ensure that research is more responsive to local socio-political contexts and needs. This would, in turn, deliver mutual benefit and new, more impactful knowledge both to communities and to research.",
"To achieve this aim, we’re orienting our project around 3 axes: (1) exploring stakeholders and relationships in place-based knowledge exchange in different regions and contexts, (2) understanding how power operates in health research, and (3) designing the structures and practices necessary to transform the research ecosystem to become more equitable, inclusive, and responsive.",
"Across this project, we’re committed to ensuring that sensitivity to power and context guide both our collaborative process and the final architecture and knowledge products we co-develop. While designing new “global” models of practice, we intend to remain grounded in the deep insights that emerge from ‘hyperlocal’ insights and innovations. To this end, the project will include the exploration of models of practices from around the world as well as place-based design workshops in South Africa, India, and Brazil.",
"To achieve these ambitions, we have brought together a dynamic and diverse team of expert collaborators representing key partners and networks in the space of community engagement and participatory research, including Restless Development, Praxis, Vocal, Fiocruz, and Eh!woza, as well as independent practitioners. Our collaborative team operates from the global South and is representative of diverse lived and professional experiences. We are a passionate, varied, and vibrant community that shares a common goal of building diversity and cultivating inclusivity in order to promote engagement and thus work to ensure accountability and transparency.",
"Reflecting on their excitement to join this collaboration, our team members shared the following thoughts:",
"“I’ve always deeply felt the disconnect between scientific knowledge production and communities. There’s too much abstraction from the places where research is being conducted. I’m excited to see a project take this on!” (Maria Malomalo, Restless Development, Zimbabwe)",
"“I’m excited to move from critiques of structures of power and inequality in global health into more action-oriented conversations about how to actually shift things” (Lindsey Reynolds, Pivot Collective, South Africa)",
"“I want to highlight the importance of a deeper historical and political perspective in project as well, looking at the history of engagement and participation in diverse regions, including Brazil and Latin America” (Gustavo Matta, Fiocruz, Brazil)",
"“Getting to do this project with an organisation like Wellcome is especially exciting, given their commitment to supporting engagement work and their influence” (Sarah Iqbal, independent consultant, India)",
"Our intent is to gather as many perspectives on these issues as possible, taking a collaborative and iterative approach to the learning journey and fostering an open, ongoing dialogue. We will publicly share our learning throughout the process and proactively create platforms and opportunities for public involvement. We hope you’re also excited to join our critical conversation and share your insights and learning.",
"As a first step, we’ve created a public survey to elicit your opinions and insights about the state of practice in community engagement and participation in research. To help shape the first phases of the project, please share your responses (and forward broadly!) as soon you can.",
"For more information about this survey or about the ‘Centres for Exchange’ project please contact cfe@pivotcollective.org"
]
}
]
}
]
}