“Democratization” has recently become a popular trope in Western public discourses on medicine, where it refers to patient participation in the gathering and distribution of health-related data using various digital technologies, in order to improve healthcare technically and socially. We critically analyze the usage of the term from the perspective of the “politics of buzzwords.” Our claim is that the phrase works primarily to publicly justify the dramatic increase in the application of information and data technologies in healthcare and therefore (...) fosters the corresponding industry. As a buzzword, “democratizing healthcare” is characterized by vagueness, which is why it receives meaning only through a word collective—a group of words that provide it with a context and are often used together with it. We examine key terms associated with “democratization” in the healthcare discourse—participation, empowerment, and personalized medicine—and show that the buzzword receives rhetorical power through the ambiguous reference to these concepts. As a consequence, the idea of “democracy” becomes diluted into meaning merely “access to,” and “healthcare” is reduced to the notion of a preventive, nonacute, monitored form of medical care. (shrink)

Population ageing and increased digitalization each constitute an ongoing and profound transformation within contemporary modes of living, as growing advances in technological development mix and intermingle with the lived realities of older people as the final recipients. It is against the backdrop of this interplay that user involvement has enjoyed ever-rising advocacy to an almost normative degree. Beyond articulating methodological principles, however, the literature has remained surprisingly vague as to the practical implementation of the approach. Less appears to be known, (...) both empirically and conceptually, about how design and user involvement are done in practice and how they would matter to bring about intentional or unintentional effects. To engage with these developments, this thesis aims at taking the practices of user involvement and design to the centre of its inquiry by adopting a perspective from Science and Technology Studies. Specifically, the thesis seeks to both build on and contribute to the established body of STS on the connection between technology design and older users and ask: What is there to learn about user involvement as a method, if we focus on the practices of doing user involvement? To answer this question, the thesis studies four different aspects of the practices of user involvement and design. In particular, the thesis reviews the literature on how user involvement mattered in previous empirical projects that include older people, it examines how different configurations of participation matter in design workshops, it scrutinizes the achievement of user involvement in corporate practices and it traces the circumstantial performances of such practices. The largest empirical piece comes from a two-year ethnographic study of a small- to medium-sized enterprise, the material from which informed Paper III and Paper IV. The findings highlight how user involvement in practice is both contingent and transformative, as it selectively enrols different participants and performs multiple realities. In practice, user involvement appears to be dependent on a set of underlying premises and socio-material conditions and thus is always a dynamic and momentary achievement. Furthermore, the thesis shows how the practices of user involvement themselves may bring into existence different realities, articulating and materializing particular versions of objects and images of ageing. Accordingly, the thesis contributes theoretically by illuminating the underlying socio-material facets of user involvement, and by emphasizing ageing as a particular object/image of design. Specifically, the appended papers encompass a conceptual framework, as well as three new concepts: design multiple, shifting interstices and viscous image landscape, in order to theorize the underlying conditions for user involvement, its relationship with design and its entanglement with ageing. Practically, the thesis enunciates three main implications regarding questions of goodness, politics and ethics. (shrink)

This article presents our experience as a multidisciplinary team systematizing and analyzing the transcripts from a large-scale (1.775 conversations) series of conversations about Chile’s future. This project called “Tenemos Que Hablar de Chile” [We have to talk about Chile] gathered more than 8000 people from all municipalities, achieving gender, age, and educational parity. In this sense, this article takes an experiential approach to describe how certain interdisciplinary methodological decisions were made. We sought to apply analytical variables derived from social science (...) theories and operationalize them through modern linguistics to guide a more theoretically informed natural language processing. The analysis was divided into three stages: (1) a descriptive analysis adapting descriptions of computational grounded theory, (2) a futurization analysis operationalizing concepts from futures studies, and (3) an argumentative analysis operationalizing concepts from argumentation theory. Overall, our methodological experimentation shed light on potential learnings for integrating a multidisciplinary perspective on NLP analysis with sensitive social content. Firstly, we developed a strategy for translation of knowledge based on the construction of what we called "analytical categories” in which a normative expectation or descriptive dimension was identified in the body of literature, operationalized through linguistics, and programmed in Python or R. Ultimately, we seek to reflect on the importance interdisciplinarity not only as means to find new analysis ideas but rather, to incorporate the critical, political and epistemological points of view to understand analysis as complex socio-technical processes. (shrink)

Who gets to practice and participate in science? Research teams in Puerto Rico and New Zealand have each sequenced the genomes of parrot populations native to these locales: the iguaca and kākāpō, respectively. In both cases, crowdfunding and social media were instrumental in garnering public interest and funding. These forms of Internet-mediated participation impacted how conservation science was practiced in these cases and shaped emergent social roles and relations. As citizens “follow,” fund, and “like” the labor of conservation, they create (...) new relational possibilities for and with science. For example, the researchers became newly engaged and engaging by narrating and displaying the parrots via an Internet-inflected aesthetic. The visibility of online modalities shifted accountabilities as researchers considered whom this crowdfunded work answered to and how to communicate their progress and results. The affordances of the Internet allowed researchers from the peripheries of the scientific establishment to produce genomic knowledge for globally dispersed audiences. The convergence of genomic and Internet technology here shaped scientific practice by facilitating new modes of participation—for laypeople in science but also for scientists in society. (shrink)

Thick concepts, namely those concepts that describe and evaluate simultaneously, present a challenge to science. Since science does not have a monopoly on value judgments, what is responsible research involving such concepts? Using measurement of wellbeing as an example, we first present the options open to researchers wishing to study phenomena denoted by such concepts. We argue that while it is possible to treat these concepts as technical terms, or to make the relevant value judgment in-house, the responsible thing to (...) do, especially in the context of public policy, is to make this value judgment through a legitimate political process that includes all the stakeholders of this research. We then develop a participatory model of measurement based on the ideal of co-production. To show that this model is feasible and realistic, we illustrate it with a case study of co-production of a concept of thriving conducted by the authors in collaboration with a UK anti-poverty charity Turn2us. (shrink)

Long presented as a universal policy-recipe for social prosperity and economic growth, the promise of innovation seems to be increasingly in question, giving way to a new vision of progress in which society is advanced as a central enabler of technoeconomic development. Frameworks such as “Responsible” or “Mission-oriented” Innovation, for example, have become commonplace parlance and practice in the governance of the innovation–society nexus. In this paper, we study the dynamics by which this “social fix” to technoscience has gained legitimacy (...) in institutions of global governance by investigating recent projects at two international organizations, the Organization for Economic Cooperation and Development and the European Commission, to mainstream “Responsible Innovation” frameworks and instruments across countries. Our analysis shows how the turn to societal participation in both organizations relies on a new deficit logic—a democratic deficit of innovation—that frames a lack of societal engagement in innovation governance as a major barrier to the uptake and dissemination of new technologies. These deficit politics enable global governance institutions to present “Responsible Innovation” frameworks as the solution and to claim authority over the coproduction of particular forms of democracy and innovation as intertwined pillars of a market-liberal international order. (shrink)

During the mid-nineteenth century, the eminent British zoologist Alfred Newton recognized that some of the ideas embedded in Origin of Species provided new scientific rationales for the preservation of endangered species. He then embarked on a twenty-five-year-long campaign for law reforms and successfully lobbied Parliament to enact three new statutes for the preservation of endangered wild birds that gave priority to the scientific value of rare species. The account of Newton’s campaign presented in this article helps to locate Newton in (...) the nineteenth century conservation movement, while also shining a side light on the relationship between conservation science and policy-making more generally, including the variety of voices and approaches taken to conservation in the UK and US. Today, as we pursue new regulatory responses to critical environmental issues, such as biodiversity loss and climate change, the history of Newton’s campaign offers an early example of a successful approach to science-based law reform. It also shows how some of the issues that Newton and his contemporaries confronted at the science-policy interface in the nineteenth century are enduring and remain relevant today, including debates about; the role of scientist-advocates in policy-making, the criteria that make science advice effective, and whether the “democratization” of science leads to better policy decisions. (shrink)

The ‘participatory turn’ in science and technology governance has resulted in the growth of initiatives designed to engage lay people in consultation and decision-making on controversial matters. Almost from the start there has been both enthusiasm and serious critique of these exercises, from scholars and activists. The gaps and challenges are well known. In this paper we indicate the limitations of deliberative mechanisms as regards how they cope with familiar forms of people’s engagement with a given matter. We examine how (...) this phenomenon unfolded at the Barcelona Citizen Conference on the Digitalization of Society; a participatory exercise inspired by the model of consensus conferences that took place in 2014 in Barcelona. Our perspective on the topic is inspired by Sociology of Engagements. Focusing on how participants and organizers deal with individual anecdotes, worries and testimonies reported during the conference, the analysis shows how these formats are ignored, externalized, banned and re-formed during deliberations. This phenomenon is seen as supporting a civic-liberal regime of engagement. (shrink)