Whose voice counts? Integrating community priorities in disease intervention policies and approaches to health

Disease prioritisation frameworks inform national approaches to health and disease. They are policy tools to support lower- and middle-income countries (LMICs) in ranking diseases in order of importance. But outcomes generally over-reflect Global North agendas, with overwhelming focus directed towards diseases that have potential to pose a pandemic, biosecurity, or global trade risk. This emphasis on threats has meant that important common diseases are often ignored, and what matters to the wellbeing and health of marginalised communities is frequently disregarded in the prioritisation of resources. This Fellowship aims to bridge the gap between geopolitical concerns and the priorities of marginalised communities in LMICs who are disproportionately affected by common, “endemic” human and livestock diseases. Through social science analysis and engagement focused on a setting in Kenya, it seeks to bring local understandings of the causes and consequence of disease into national policy and disease control approaches, generating tools and lessons for broader application. The Fellowship will support me in consolidating my PhD which addressed issues of equity and inclusion in the prioritisation, surveillance, and burden of human and livestock diseases, including zoonoses – diseases that transmit from animals to people. Through ethnographic and participatory research with Kenyan Maasai - pastoral communities where cattle are embedded in sociocultural domains, power, and livelihoods - I explored how lived experiences, social inequities and histories, and the centrality of cattle, collectively shape priorities, conceptualisations of risk, and indigenous (Maa) language disease ontologies. As a form of knowledge management, ontologies represent a shared understanding and philosophy, supported by an agreed vocabulary. The Fellowship will enable me to conduct minimal additional participatory validation activities with original study communities to enhance rigour and validity of an indigenous language cattle disease ontology framework developed during my PhD. Such a framework will offer avenues to integrate local priorities in disease policies, including surveillance and prioritisation, providing an innovative approach to facilitate knowledge co-creation between communities, scientists, and policymakers. Publications arising from this work will complement my critical analysis of the primary zoonotic diseases prioritisation tool which found significant methodological gaps. The tool, adopted by policymakers in over two thirds of African nations, including Kenya, lacks sufficient frameworks for ensuring transparency. This impedes capacity to validate and justify outcomes, raising alarming questions of equity and inclusion. My analysis further interrogated top-down approaches to disease surveillance and control in remote rural settings where community members are often treated as passive data providers, recruited to report specific events to authorities. Surveillance is a key priority for economic and political agendas, and has potential to generate critical data for disease prioritisation. But such instrumentalist approaches to involving communities disregards the value of their knowledge; it positions people as tools, and ignores the interests and needs of those living with disease. One of several planned publications, my manuscript will offer recommendations, informed by decision theory and anthropology, to improve prioritisation and ensure transparent inclusion of local priorities in national policies. All findings will be shared in accessible formats with study communities, ensuring transparency and collective benefit. Abstracts will also be submitted to key conferences, and findings will be presented and shared with national and regional stakeholders in Kenya. Overall, this Fellowship will offer pivotal career development opportunities, enabling me to contribute to academia and society, while building my network and applying for further funding.