Send message to Author

Paper short abstract

This paper explores the overlapping temporalities involved in home-based clinical trials for paediatric rare disease. It employs the meantime to make visible relational complexities around data and care, and opens up questions around trial ethics, participation and responsibility.

Paper long abstract

This paper explores the multiple and overlapping temporalities of data and care practices in the context of home-based clinical trials for paediatric rare disease. Trial temporalities are oriented towards improving care for future patients through forming better understandings of a condition, trialling new interventions, or piloting technologies for further data production in the home. Participants’ temporalities revolve around the demands of trail participation, the rhythms of everyday life, and the ongoing management of a rare disease. Drawing from an ethnography of home-based trials and paediatric rare disease, this paper employs the ‘meantime’ to apprehend the entanglements between these distinct yet co-existing temporalities. The episodic nature of a trial protocol (eligibility screening; consent and enrolment; site visits; at-home measurements; follow-up) is juxtaposed with practices that are fundamental for the participants but peripheral to the trial: daily negotiations of a rare disease, worries of future deterioration, and hopes for possible treatments. In a meantime between the commencement of the trial and a time when the trial’s benefits might be realised for others, families do their own sense-making of data produced during their child’s trial participation, sometimes incorporating this data into the ways they navigate disease and provide care. The meantime makes visible nuances and complexities that may not have been apparent within other temporal understandings. In doing so, the meantime opens up important questions around the temporal limits of a trial, the ways in which a trial can seep into daily life, research ethics, and the responsibility of trialists around patient care.