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Accepted Paper:

Reconsidering empathy, privacy and autonomy: engaging with key concepts in the design of technology for self-management of health  
Rachael Gooberman-Hill (University of Bristol)

Paper short abstract:

This paper focuses on the design of technologies that aim to facilitate self-management of long-term conditions. Reconsidering the notion that technology may empower individuals and promote autonomy, the paper draws on work within a technology design project to explore concepts including empathy and privacy.

Paper long abstract:

This paper considers key concepts in self-management of long-term conditions in the context of a multidisciplinary project to design home and wearable technology. The drive towards self-management for long-term health conditions centres on the notion that individuals take responsibility for assessing their own health and acting in ways that are commensurate with biomedical models of a good patient. The language of this approach focuses on empowered individuals taking responsibility, self-monitoring of health and changes in health status, and undertaking self-regulation and self-care, with medical assistance only sought when necessary and appropriate as defined by biomedicine. New technologies using internet enabled devices are increasingly promoted as ways to foster self-management, and home hubs and wearable technology are under development to achieve this aim. This paper reflects on work within a multidisciplinary project in which engineers, designers, social scientists, ethicists and an anthropologist are collaborating to develop such a home hub and wearable device. Reflecting on the process, the paper shows how cross-disciplinary dialogue is highlighting the importance of ethical considerations such as privacy and autonomy. By placing these in the foreground of conversations about the needs of 'end users' of the technology, core concepts come under scrutiny, including monitoring and empowerment. This paper describes empirical and conceptual work within the multidisciplinary project. It suggests that previous research into the role of empathy in such a design context remains relevant if we are to understand how best to engage as anthropologists in fast-paced settings of technological innovation for self-management of health.

Panel P038
The self-management of chronic disease: critical perspectives [MAN]
  Session 1