Producing communal health through self-care: the emergence of digital patient activism

This study shows how patients co-produce health knowledge when they use digital technology (such as health apps and online platforms) to manage their health and the implications technological self-care has for communal health. It presents results from a qualitative study that took place in the English healthcare context and involved a range of stakeholders such as policy makers, patient organisations and patient experts, and health IT developers (e.g. health apps). The paper moves away from how patients use digital interfaces to ‘consume’ information towards how they are ‘activated’ on the basis of the information they have consumed or created and the implications of their activation for others. We argue that a care for the other emerges when patients self-manage their health through technological interfaces. We name this phenomenon digital patient activism and show that this is an effect of self-care (albeit a conditional one), which although associated with a neo-liberal discourse that assumes self-responsibility merits attention and recognition given the value it creates for the community.