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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]

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]