Beyond the status quo: Reimagining Knowledge Exchange in Health Research — Perspectives from India
Beyond the status quo: Reimagining Knowledge Exchange in Health Research — Perspectives from India
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.
Reimagining Knowledge Exchange
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.