Power and agency in health information technology: towards a more meaningful participatory design for sustainable development

The role of information technology (IT) in improving healthcare has been acknowledged in existing literature. However, implementation of health IT projects in the global South has yielded mixed results. Some projects have failed outright, while others have been wildly successful at improving the effectives and efficiency of healthcare but eventually failed due to decreasing levels of external support. Participatory design has been highlighted as a possible solution to this unsustainable development. However, the few evaluative studies of these projects have indicated that even participatory design does not ensure project sustainability. A rethinking of participatory design is needed if it is to remain a vital aspect of sustainable development. To that end, this paper first reviews several health IT case studies in India to show the reasons for their long-term failure despite using participatory design. These case studies are unique because the client population is community health workers with scant resources and little agency in their day to day routines. The community health workers often have to follow guidelines imposed on them from the top-down despite knowing more about the local situation. This paper argues that participatory design is too often centered on technology and fails to deal with existing issues of disempowerment that health workers may face. Instead, participatory design with the client community must seek to change existing power relationships in order to give them agency in championing the new IT when external support decreases. The concept of lay participatory design is suggested as a possible approach to changing power relationships.