Patient associations as knowledge intermediaries in breast cancer governance in Mali: a prospective qualitative analysis
ROBIN, J.; Ly, M.; Niangaly, H.; Schantz, C.; Keita, A.; Kante, K.; Ridde, V.
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BackgroundBreast cancer is an increasing public health concern in many low- and middle-income countries, yet prevention and care decisions do not consistently rely on evidence. In Mali, patient associations are increasingly visible in cancer advocacy, but their potential role in mediating research and experiential knowledge within decision-making remains poorly understood. This study adopts a systemic perspective on knowledge transfer to examine the conditions under which a patient association-led knowledge intermediation mechanism could plausibly emerge and be embedded within breast cancer governance. MethodsWe conducted a qualitative pre-implementation study based on 29 semi-structured interviews, one focus group, and participant observation involving patient association members and leaders, health professionals, researchers, decision-makers, international partners, and media representatives. Data were analysed using an adapted version of the Consolidated Framework for Implementation Research to guide construct-based coding, followed by cross-domain analysis to identify clusters of interacting determinants synthesised into broader analytical configurations. ResultsAnalysis identified three configurations shaping the plausibility of patient association-led knowledge intermediation in breast cancer governance, across institutional, organisational, and epistemic dimensions. First, fragmented institutional arrangements, project-based financing, and discontinuous coordination limit the stabilisation of interfaces and continuity of interactions, thereby constraining the emergence of sustained knowledge transfer processes. Second, patient associations hold strong experiential legitimacy and mobilisation capacity, but their ability to assume intermediation roles is constrained by stigma, limited confidence in engaging with scientific and policy-relevant knowledge, restricted access to data and analytical resources, and weak integration into institutional decision-making spaces. These constraints are also shaped by gendered illness trajectories and social expectations that affect womens ability to engage publicly and the recognition of experiential knowledge as policy-relevant evidence. Third, competing framings of cancer problems, combined with institutional norms privileging biomedical and quantitative evidence, narrow the range of knowledge considered actionable, limiting the integration of experiential and contextual knowledge into decision-making. Together, these configurations identify the interdependent conditions shaping the emergence, functioning, and durability of association-led knowledge intermediation mechanism. Without simultaneous alignment of institutional, organisational, and epistemic conditions, intermediation is likely to remain partial, episodic, and weakly sustained. ConclusionThese findings suggest that association-led KT cannot rely on patient associations alone, nor on capacity-building alone. It requires implementation strategies that build structured interfaces enabling patient associations, researchers, clinicians, and decision-makers to jointly interpret and translate heterogeneous forms of knowledge into actionable inputs, while addressing the gendered conditions of womens engagement and the uneven recognition of experiential knowledge in institutional evidence use. Further research is needed to test how such relational configurations can be operationalised and sustained in constrained health systems.
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