Participatory epidemiology: Reviewing experiences with contexts and actions

This paper reviews experiences with participatory epidemiology (PE) and focuses in pastoralist areas of Africa where much of the early development and institutionalization of PE occurred. The paper discusses the importance of context when designing PE activities and framing study questions, and uses the example of changing livelihoods in pastoralist areas, and marked wealth and gender differences within communities. By reference to a recently proposed definition of PE that includes community empowerment, the paper describes the marked socio-economic and gender differentiation in pastoralist communities. In these contexts, questions of "disease control for who?" and "empowerment for who?" arise, as does the need to move beyond the concept of communities as homogenous social and economic units. By reference to the persistent complex emergencies and other humanitarian crises, the paper discusses community participation and how functional participation in programmes and PE can contribute to successful livestock disease control. In contrast, empowering forms of participation are difficult to achieve in humanitarian contexts and might not be needed to achieve effective livestock disease control. In non-humanitarian contexts, and secure countries with stable governments, national control programmes for important transboundary or zoonotic diseases usually require control strategies that can be applied consistently across areas, and with disease policy, funding, coordination and implementation controlled centrally. In contrast, empowerment in PE implies local, community-level decision-making and control of resources. The paper also discusses importance of designing PE studies that focus on action, and participatory evaluation of new or adapted disease control methods with communities.