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Health innovation is mainly envisioned in direct connection to medical research institutions or pharmaceutical and technology companies. Yet, these types of innovation often do not meet the needs and expectations of individuals affected by health conditions. With the emergence of digital health technologies and social media, we can observe a shift, which involves people living with illness modifying and improving medical and health devices outside of the formal research and development sector, figuring both as users and innovators. This patient‐led innovation has been celebrated in innovation studies and economics as a "bottom‐up" type of innovation. In this article, we take a closer look at open‐source patient‐led innovation in the context of type 1 diabetes care. In our inquiry, we pay particular attention to the social and ethical dimensions of this innovation, building on empirical material. Upon exploring the notion of patient‐led innovation and its socio‐political context through the lens of intersectional and global health justice, we argue that a proactive strategy is needed to ensure that open‐source patient‐led innovation will be more globally accessible, center the health needs of the most underserved populations, as well as facilitate equitable and just health benefits. To support this aim, we provide a range of examples of different initiatives addressing the persistent inequalities that have so far inhibited patient‐led innovation from more fully materializing its innovative potential. [ABSTRACT FROM AUTHOR]

We propose a step‐by‐step methodological framework of translational bioethics that aims at changing medical practice according to normative–ethical requirements, which we will thus call "transformative medical ethics." The framework becomes especially important when there is a gap between widely acknowledged, ethically justified normative claims and their realization in the practice of biomedicine and technology (ought–is gap). Building on prior work on translational bioethics, the framework maps a process with six different phases and 12 distinct translational steps. The steps involve various research activities including conceptual philosophical inquiry and (socio‐)empirical research. On the one hand, the framework can be used as a heuristic tool to identify barriers to the transformation process. On the other hand, it can provide guidance for researchers and practitioners to develop appropriate (conceptual action and practice) models, which are then implemented and evaluated in specific practice contexts. We use the example of realizing the norm of respect for autonomy in the practice of medical decision‐making to illustrate the framework. Further research is required, for example, to theoretically underpin the framework, to apply it to other ought–is gaps, and to evaluate its feasibility and effectiveness in various practice areas. Overall, the framework of transformative medical ethics suggests a strategic process to investigate and promote practice change that is ethically informed in all phases. [ABSTRACT FROM AUTHOR]

In this article, I reflect on my empirical engagement in the global (digital) health movement #WeAreNotWaiting in the context of Type 1 Diabetes. I want to take my relationships and interactions in this community as a starting point to discuss the multifacetedness of doing ethnographic research in health-political activist communities while not being affected by the health conditions the research participants are affected by and not sharing their explicit personal-political aim. Building on Donna Haraway's conceptualization of situated knowledge and Kim TallBear's notion of ethics of accountability, I empirically retrace three accounts of disclosing otherness in my empirical engagement that were generative for my understanding of the movement. I suggest that the moments where one needs to explain oneself, where one is met with skepticism, or experiences tensions, might be uncomfortable and challenging but can be generative. To engage with them can contribute to the accountability of the ethnographer. [ABSTRACT FROM AUTHOR]

In this article, I explore knowledge practices in increasingly digitized, data-driven, and personalized healthcare settings by empirically focusing on the "looper community" in type 1 diabetes. This community develops and uses open-source automated insulin delivery systems and frequently criticizes slow innovation cycles and data monopolies of commercial device manufacturers. Departing from the literature on patient knowledge, I argue that studying these knowledge practices at the intersection of digitized and personalized health care, open-source innovation, and patient activism calls for an expansion of the theoretical notions of patient knowledge. Empirically I map out three knowledge practices: technical, including maintenance and repair work; recursive, including the building and maintenance of adjunct care and support structures; and methodological, including scientistic forms of self-experimentation. I propose "elaborative tinkering" to foreground the nuances of when and how patients' different forms of knowledge practices intertwine and when they are kept apart. This approach offers new concepts for understanding what it means to know as patients in spaces of (chronic) self-care, innovation, and activism. [ABSTRACT FROM AUTHOR]

Femtech technologies, such as period and fertility trackers, promise their users empowerment through reliable knowledge about and control over their bodies and ownership of their procreative health. However, the notion of empowerment through period and fertility apps deserves scrutiny. Based on a thematic analysis of a range of 'female health' app promotion materials, we explore the kind of empowerment promised by app providers and point towards significant contradictions and tensions in the discursive tales of empowerment. Building on digital sociology and intersectional feminist scholarship, we observe that the discourse promoting many of the health apps is grounded in exclusionary ontologies, normative femininity, epistemic injustice and heterosexist notions of female sexuality, which undermines the liberational rhetoric of these digital health technologies. [ABSTRACT FROM AUTHOR]