Negotiating with digital self-monitoring: A qualitative study on how patients with multiple sclerosis use and experience digital self-monitoring within a scientific study

Abstract

Research shows that patients can have values and use practices that are different from those envisioned by technology developers. Using sociomaterialism as an analytical lens, we show how patients negotiated with digital self-monitoring in the context of a scientific study. Our paper draws on interviews with 26 patients with the chronic neurological disease multiple sclerosis (MS) who were invited to use an activity tracker and a self-monitoring app for a period of 12 months as part of their everyday life. Our study aims to fill a gap: relatively little is known about how digital self-monitoring becomes materialized in the everyday lives of patients with chronic diseases. We show that patients engaged in digital self-monitoring because they are eager to participate in research to contribute knowledge that will benefit the larger community of patients rather than to improve their personal self-management. Although respondents adhered to digital self-monitoring during the study, it is not self-evident that they would do so for private self-monitoring purposes. It became clear that respondents did not necessarily perceive digital self-monitoring as useful for their self-management practices due to their established knowledge and routines. Moreover, respondents referred to the inconvenience of having to perform self-monitoring tasks and the emotional burden of being reminded of the MS because of the digital self-monitoring. We conclude by indicating what could be considered when designing scientific studies, including the suitability of conventional study designs for evaluating technologies used daily by patients and the challenge of integrating patients' experiential knowledge into scientific practices.

Keywords: digital self-monitoring; lifeworld; multiple sclerosis; patient participation; technology assessment.