Disclosing otherness: situated knowledges and the politics of ethnographic approaches to the #WeAreNotWaiting movement in Type 1 Diabetes and beyond

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

Digitized patients: elaborative tinkering and knowledge practices in the open-source type 1 diabetes "looper community"

In this article, I explore knowledge practices in increasingly digitized, data-driven, and personalized health-care 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

Patient‐led innovation and global health justice: open‐source digital health technology for type 1 diabetes care

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

Transformative medical ethics: a framework for changing practice according to normative–ethical requirements

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

Relational und dimensional: heuristische Dimensionen in der Situationsanalyse am Beispiel von Care-Praktiken und ihrer Materialität

Die Berücksichtigung von Materialität ist ein wesentlicher Bestandteil der Sozialwissenschaften des 21. Jahrhunderts. Für die empirische Sozialforschung ergeben sich daraus methodologische und methodische Herausforderungen, insbesondere in Bezug auf nicht-menschliche Akteur*innen und deren Körperlichkeit. Dies erfordert spezifische Analyseverfahren. Die Situationsanalyse mit ihrer Fokusverschiebung auf die Relationalität von heterogenen Akteur*innen, die eine Handlungssituation generieren, bietet dazu eine entsprechende Möglichkeit. Im vorliegenden Beitrag gehen wir auf der Basis zweier empirischer Projekte zu Care-Praktiken im medizinischen Bereich der Frage der Multidimensionalität von materiellen Beziehungen nach. Die Beispiele beziehen sich zum einen auf das Einschläfern von Pferden in der Tiermedizin und zum anderen auf automatisierte Technologien bei der Behandlung von Typ-1-Diabetes. Im Zentrum der Analyse steht die Materialität des Beziehungsgeflechts. Wir schlagen vor, den Werkzeugkasten der Situationsanalyse um ein dimensionalisierendes Relations-Mapping zu erweitern, indem die Beziehungen zwischen Elementen in Dimensionen unterteilt werden. In den Beispielen nutzen wir eine Dimensionalisierung, bei der wir uns an der Care-Theorie orientieren. Die Verwendung von unterschiedlichen Farben im Mapping macht die Multidimensionalität der Situation erst sichtbar und ermöglicht es, der Komplexität der materiellen und körperlichen Beziehungen analytisch mehr Raum zu geben.The consideration of materiality is an essential component of the social sciences of the 21st century. For empirical social research, this poses methodological challenges, especially concerning non-human actors and their corporeality. Therefore, specific analytical strategies are required. Situational analysis, focusing on the relationality of heterogeneous actors generating a situation, offers one such possibility. In this article, we explore the multidimensionality and relationality of materiality through two empirical projects about care practices in the medical field. Examples are euthanizing of horses in veterinary medicine and automated technologies in managing type 1 diabetes. In the analysis, we focus on the materiality of the relational network. We propose to extend the situation analysis toolbox by adding dimensionalizing relational mapping, where we categorize the relations between elements into dimensions. In the examples, we use a dimensionalization inspired by care theory. The use of different colors in the mapping practice highlights the multidimensionality of the situation and gives more analytical space to the complexity of the material and embodied connections

Mobile Gesundheitstechnologien, soziale Gerechtigkeit und populationsbezogene Vulnerabilitäten

Mobile Gesundheitstechnologien (mHealth) fördern den Trend hin zu Eigenverantwortung und Selbstmanagement. Ziel des Beitrags ist es, am Beispiel von Diabetes mellitus Typ 2 (T2DM) die Diskussion zu mHealth, Eigenverantwortung und Gerechtigkeit – welche es bisher nur in Ansätzen gibt – aus einer Public-Health-ethischen Perspektive zu vertiefen. Dabei zeigt sich, dass mHealth im Bereich T2DM soziale Gesundheitsgerechtigkeit einerseits verbessern, andererseits aber auch soziale Gesundheitsungerechtigkeiten verschärfen kann. Aus einer gerechtigkeitsfokussierten, Public-Health-ethischen Perspektive auf T2DM-mHealth ist es notwendig, besser zu verstehen, ob und wie vulnerable Bevölkerungsgruppen bei mHealth-Entwicklung und -Einsatz mitbedacht werden, wie sie die Nutzung der Technologie erleben, welche sozialepidemiologischen Auswirkungen der zunehmende Einsatz von mHealth haben kann, welche gesundheitlichen Ungleichheiten im Bereich T2DM ungerecht sind, inwieweit die Eigenverantwortung in die Hände der Nutzenden gelegt werden soll und wo die Grenzen der Eigenverantwortung liegen. Die Berücksichtigung der sozialen Diversität und der sozialen Determinanten von Gesundheit ist ein stetiger Prozess und muss alle Phasen der Entwicklung und des Einsatzes von mHealth durchziehen

Search for dark matter produced in association with bottom or top quarks in √s = 13 TeV pp collisions with the ATLAS detector

A search for weakly interacting massive particle dark matter produced in association with bottom or top quarks is presented. Final states containing third-generation quarks and miss- ing transverse momentum are considered. The analysis uses 36.1 fb−1 of proton–proton collision data recorded by the ATLAS experiment at √s = 13 TeV in 2015 and 2016. No significant excess of events above the estimated backgrounds is observed. The results are in- terpreted in the framework of simplified models of spin-0 dark-matter mediators. For colour- neutral spin-0 mediators produced in association with top quarks and decaying into a pair of dark-matter particles, mediator masses below 50 GeV are excluded assuming a dark-matter candidate mass of 1 GeV and unitary couplings. For scalar and pseudoscalar mediators produced in association with bottom quarks, the search sets limits on the production cross- section of 300 times the predicted rate for mediators with masses between 10 and 50 GeV and assuming a dark-matter mass of 1 GeV and unitary coupling. Constraints on colour- charged scalar simplified models are also presented. Assuming a dark-matter particle mass of 35 GeV, mediator particles with mass below 1.1 TeV are excluded for couplings yielding a dark-matter relic density consistent with measurements