Accepted paper:

From "do it yourself" (DIY) movements to citizen science: The case of wearable sensors in healthcare


Susana Nascimento (European Commission, Joint Research Centre)
Lucia Vesnic-Alujevic (Joint Research Centre)
Ângela Guimarães Pereira (European Commission )

Paper short abstract:

Paper long abstract:

The involvement of stakeholders, and especially citizens, is heralded as a 'responsible' action for addressing S&T governance and policy challenges. Emerging ICTs are increasingly used in bottom-up or DIY initiatives where citizens collect, interpret and share data, and in this process create knowledge. These forms of citizens-led or peer-production of knowledge are questioning the directions of public engagement toward what is called citizen science, DIY or grassroots science and technology development. In this context, it is vital to discuss the issues of transparency, reliability and impact of citizen inputs to complement, and in some cases, change or redirect predominant practices. In this paper we will focus on wearable sensors as an integral part of mobile health for diagnosis, treatment and monitoring of patients, more particularly on analysis of online communities' activities of "fitbit" (a commercial wearable device) and the "quantified self" movement. The use of sensors not only potentially changes one's relationship with one's body and mind, but also the role and responsibilities of patients and healthcare professionals. Citizen initiatives like the "quantified self" movement claim the right to "own" the sensor's generated data. But how these data can be used through traditional healthcare systems is an open question. We argue that the current publics' visions about the use of these devices for health monitoring are often disconnected from those of policy makers and healthcare professionals, and that there is a need to create spaces for articulation of DIY movements arising from the pervasiveness of ICTs in all life spheres.

panel C3
Stakeholder involvement: An inclusive or exclusive practice?