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The #WeAreNotWaiting movement is a global digital health phenomenon in which people with diabetes, mainly type 1 diabetes (T1D), engage in the development and usage of open-source closed-loop technology for the improvement of their "chronic living" (Wahlberg et al. 2021). The characteristics of a digitally enabled and technologically engaged global activist patient collective feed into existing narratives of user-led and open-source innovation. They also call for more exploration of what it actually means to be locally involved in this kind of technologically mediated and global form of patient engagement. Building on empirical research conducted in the German healthcare context, we explore the different forms of material participation encountered among a group of people with T1D (who describe themselves as loopers), who are engaged in the development and usage of this open-source technology. Introducing the concept of device activism, we retrace three different device-centered narratives that show how a globally shared concern and political participation through technology use varies with local practices. Hereby we stress that the engagement in the #WeAreNotWaiting movement is both shaped by and is shaping the matters of concerns: devices in, on, and with bodies. [ABSTRACT FROM AUTHOR]

Patient-Reported Outcome (PRO) data are being widely mobilised as a means to implement clinical and governance decision-making systems based on measurement of "what matters to patients". Little is known, however, of how these—datified and calculative—versions of patients' embodied experiences become integrated in healthcare systems to achieve clinical, managerial and political goals. Drawing on data collected on a Danish national initiative to establish a questionnaire bank and a technical infrastructure for PRO data, this paper explores the epistemic and moral tensions of emerging infrastructures for patient-reported data. Our data reveals that those involved in crafting and developing the Danish PRO system seek to encode 'patient experience' in the Danish healthcare system by infrastructuring for the clinic, by infrastructuring for the organisation, and by infrastructuring for participation. The infrastructuring efforts in each of these domains involve tensions as the emerging phenomenon of PRO rubs up against existing ways of working clinically and of enhancing and evaluating the quality of clinical care. Thus, while we share critical social science concern about standardisation of patient experience, we show here how those concerns are already pragmatically present in the infrastructuring efforts that patients, clinicians and administrators engage in. [ABSTRACT FROM AUTHOR]