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Community Involvement

“Community involvement” represents on-the-ground implementation of science’s accountability to society, at the local as well as global level. Engaging a wide range of stakeholders as active and informed partners in decision-making about the research and its implementation enhances both the scientific validity and ethical integrity of clinical trials.

This has been widely recognised in the field of AIDS research, and almost all publicly-funded research networks require a community involvement component. Generally this has been done by forming a community advisory board (CAB) or similar structure, a model developed in the US in the early days of activist involvement in HIV treatment trials. Recently, however, research networks are questioning whether the CAB model is the best or only approach to developing partnership with communities. The community liaison teams at various trial sites are exploring a variety of strategies to engage with communities as partners in the research enterprise.

The Community Involvement Initiative of the Global Campaign supported both trial sites and affected communities in conceptualising and implementing a broader, more comprehensive scope of activities --a mobilisation framework-- that addresses the fundamental goals of community involvement: trial start-up, exchange of knowledge and information, maintaining scientific and ethical integrity of the trial, and community capacity-building.